[heartlog]

We were told to expect the worst, but almost two weeks on from birth Thomas is doing tremendously well

Our little boy Thomas was born on the 21st December 2016 (five weeks early). We found out on my partners 20 week scan that our little one had Hypoplastic Right Heart Syndrome, Tricuspid Atresia, Pulmonary Atresia & VSD.

This to us was a massive shock to both of us, and we were taken in to a small room at St Thomas' London to discuss possible options after the scan (as if the news wasn't hard enough to take in at the time). After a long discussion and a few days to think about it we were back up to the hospital to see the consultant.

With the news of our little ones condition no less harder to get our heads around we gave the decision. After a long chat amongst ourselves and a lot of research into the condition knowing what could happen and the best possible outcome, we chose to carry on. Being young parents, the consultants looked shocked at our decision, however they were very helpful from this point onwards. We knew the decision we made would make our journey a very difficult one, but who doesn't deserve a chance in life these days?

So anyway after the decision was made by us to proceed forward on this heart journey a plan was put in place with our consultant, and also a foetal cardiologist specialist. Rather than being rambled with words we would never understand, everything was drawn into diagrams, which made things a lot easier to interpret.

We were then made more appointments for scans on the little one to make sure everything was what we pictured and nothing else changed. It was a rocky road for us and the scans that were supposed to be happy times for us now became scans of nervousness, wondering if there was anything else that they would pick up on the scans. From Thomas's point of view nothing else was picked up with regards to his health, but the complications didn't stop there. After the initial 20 week abnormality scan, it was discovered that my partner was carrying a lot of excess fluid around Thomas. This initially didn't pose any threat as it is a fairly common thing, but again it was something that they wanted to keep a close eye on (another spanner in the works, and more trips to London).

A couple of weeks went by with the feeling of what else could go wrong and another scan date came around. Everything with Thomas seemed ok at this point, the fluid was ok but was still increasing at a steady rate so nothing to cause concern. Another couple of weeks went by and at this stage my partner was at 31 weeks. During the night my partner had a massive bleed (every parents worst nightmare during pregnancy). I phoned the local midwives, who advised to phone an ambulance and get straight there.

Half an hour later in the ambulance we arrived at our local labour ward. Midwives running round doing various different tests on my partner. I felt so helpless I couldn't do anything, and more to the point didn't know what the hell was going on, were we losing our little boy before he even had a chance of life?

After lots of testing and traces on Thomas, it turned out everything was ok with him, no signs of stress or anything like that. So what was causing her to bleed? To be honest even to this day the doctors are still baffled to what caused it. They decided it was best my partner stayed in for a while so they could monitor Thomas and herself. She was blue lighted up to London to the specialist unit  after a couple of days as the bleeding still hadn't stopped. More ECG tracing tests showed Thomas was still moving about and still wasn't showing any signs of stress. My partner was kept in for two weeks to be monitored and to control the blood loss, and eventually discharged from hospital with everything apart from the fluid looking good. A later scan revealed that the placenta was starting to show signs of deterioration, and it was discussed that it was in Thomas's best interest to get to 38 weeks before they consider delivery.

Each week up to the 38 week mark my partner was being scanned and the placenta was now being looked at too alongside the fluid build-up. The fluid was still increasing and Thomas was still moving so they weren't concerned and wanted to get to 33 weeks and go back for another scan. The 33 week scan came and results pretty much stayed as the previous time apart from my partner showing signs of preeclampsia, so was told to get to 35 weeks and that would be something else they would monitor. Two days before the 35 week mark my partner was again admitted into London after an antenatal appointment with the consultant, because Thomas was showing signs of struggle due to the placenta deterioration and my partners preeclampsia diagnosis. We took it on the chin that this would probably be it for now until the time we had him.

Week 35 came and this was it, another scan revealed our little Thomas’ heart rate was decreasing dangerously low and Thomas had to be delivered. I'm not quite sure what happened after this as i was still at work at this point, however after a bad trace on the monitor a crash call was initiated and my partner was rushed in for an emergency Caesarean section. At 11.22am on the morning of the 21/12/16 little Thomas decided he had other plans then to get to 38 weeks and wanted to spend Christmas with his family. We were absolutely shocked at this arrival, but so glad he came when he did.

We are grateful for the consultants decision to deliver Thomas. We were told to expect the worst, but almost two weeks on from birth Thomas is doing tremendously well and we are super proud of him. Cardiologists and consultants are over the moon with his progress so far and have said if he continues to impress the way he is now it could open up other operating scenarios.

After this whole journey we could not be happier, we are glad this rollercoaster of a pregnancy has finally ended with a remarkable result, now to continue forward with this journey, and for Thomas to keep on impressing.

[heartlog]

I’m part of the first generation with half a heart to survive to adulthood.

I’m Donna, 49 years old and married with two children; nothing out of the ordinary there. But everyone has a story to tell and this is mine…

When I was born in 1967 there were no ante-natal scans, so when I was struggling and turning blue on feeding at three months old, and the Cardiologists at Birmingham Children’s Hospital found I had a complex cardiac condition it came as quite a shock to my parents.  In fact, the only reason I survived was because my patent ductus remained open – usually it closes shortly after birth. They were told I would be doing well if I survived to the age of five! I became known as the ‘girl with the blue nose and lips’.

At nine years old I had a Glenn shunt between my heart and lungs to get more oxygen around my body. After this operation my parents were told that on opening me up it was all more complicated than the surgeons realised and they would just have to see how I managed. In those days the Children’s Hospital was based at Ladywood, Birmingham and to go down to the operating theatre you were taken outside – a few years later a big fundraising campaign was set up and a canopy was erected in order to protect the children on their way to and from the theatre. Also you didn’t go to ICU, you simply returned to the ward (chest drains and all) with your bed situated close to the Nurses’ Station.

Throughout my school years it was obvious that I could not take part in PE. Before my Glenn I even struggled at playtime, especially in the winter months, and spent most of my time in the classroom reading – I think by the time I left primary school I had probably read every book in the school library! At no point in my school life did I receive any extra support, and I do remember feeling very breathless every time I got to the top of the stairs if I needed to go to a lesson on one of the upper floors when I was at senior school. I also recall the time my class had to walk across the fields to the local sports centre where sports day was being held; we were told to run, so I did… and collapsed under a tree. The teachers were very careful not to repeat that incident!

After I left school I went to college and then started working in a General Practice as a Medical Secretary.  I also met Andre, who is now my husband, and life continued on. I had learnt to cope and manage my heart condition, and although I got more tired and breathless than other people, I feel I tried hard to not let it interfere with anything I wanted to do.  It wasn’t until I suffered a TIA that my Cardiologist at that time (Dr John Wright) suggested that there was a new operation available, the Fontan, which could help me. At the time I was 22, and really just wanted to get on with my life, but after the benefits was explained to me, in particular that it may give me a chance to have children, and after much discussion with the important people in my life, I decided to go for it!

For the first time the complexities of my condition were explained to me: the fact that I had no tricuspid valve (tricuspid atresia), transposition of the great arteries, ASD and a single ventricle – ‘half a heart’. I was informed that I was part of the first generation with my condition to survive to adulthood.

I had my Fontan June 1990, in the middle of World Cup fever! Personally I was hoping to spend the whole tournament asleep, but after a stint in ICU, which included being rushed back to theatre for a burst blood vessel, I returned to the ward. Lying in my hospital bed, feeling very uncomfortable from my chest drains, my mum read from my notes that I ‘had been slow to warm up’. My dad turned to my then boyfriend (now my husband) and asked if that was true…. Poor bloke didn’t know where to put himself!

My Fontan certainly did improve my health – for the first time I was pink, and my breathing was so much better.  We got married, and then we wanted to start a family. Since my Fontan I had been on Warfarin so I knew that pregnancy was not going to be easy. Dr Wright referred me to a very eminent Cardiologist, Dr Jane Somerville, at the Brompton Hospital thinking she had experience of single ventricle patients having children. However, during our consultation she remarked: “Well I’ve never had any one with your condition have a baby, but I really think you should try!” So we did! In no way can I say my pregnancy was uneventful, with a long stay in hospital, episodes of bleeding and constant scans, but in January 1996 our son, Nathan, was born. A few years later, when I was unexpectedly pregnant again, I informed the doctor about to carry out my echocardiogram that I was about 10 weeks pregnant; “People with Fontan’s don’t get pregnant” was his reply. Imagine his surprise when I told him I already had a seven year old at home! During my first pregnancy I was still under the Children’s Hospital, as there were no Adult Congenital Heart Units, but by the time I had Cerys, our daughter, I was under the team of adult specialists at the QE Hospital, Birmingham.

It is this team that four years ago, when I was struggling again, and there was talk of a heart transplant; picked me up, sorted me out and put me back on my feet again to carry on with my life.

Obviously life isn’t perfect; my cardiac condition impacts on how much I can do, especially as I get older (and at 49, apparently I really am an old Fontan!), and both my children have CP and are full time wheelchair users, but we enjoy life. My son is now 20 and at university, and my daughter is 13 and very creative. We are very proud of them both. We have a family motto that “in order to be irreplaceable, you have to be different” and we certainly are unique.

When I was growing up, my parents and I didn’t have a supporting charity like Little Hearts Matter, and I love to see how the charity offers advice and support to all the parents, children and young people. I also enjoy seeing how the parents support each other via the Facebook pages, etc. I feel I can empathize with how the parents are feeling; having sat next to several hospital beds with my own children, and how the children feel when they have had their operations (chest drains – yuk!) and the young people growing up with ‘Half A Heart’.  I hope that they know life is there for the taking and to enjoy the adventure!

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[heartlog]

“I don’t mind having a special, handmade heart but I sometimes get frustrated and unhappy about not being able to represent the school (in sports) because I will get too tired.”

Hello my name is Hannah and I’m 10 years old and I have a handmade heart. The name of my heart condition is hypoplastic left heart syndrome, which means that only half of my heart works.

I was very poorly when I was born and I’ve had three heart operation and three cardiac catheters. I’m proud of myself for being able to go to school and take part in school routine.

When I had my first operation I had to be NG tube fed up until I was 4 years old. This meant that a tube was placed through my nose into my stomach. I remember being at my nan’s when my mummy would change my NG tube and I did not like it at all, it made me feel sick.

I was eight months old when I had my second operation. I was in hospital for 10 days. I do not like being in hospitals as it makes me very unhappy, but I know the nurses and doctors help me.

When I was five years old I underwent my third surgery and was in hospital for three weeks. When I had my chest drains out I got an infection which ended up all around my scar. As a treat for being so brave I went to London to meet Simon Cowell and spent time at the X Factor. I really enjoyed myself.

I enjoy school and learning about history (I just done a written paper on henry vlll ) and maths. I’m in the school choir and I like playing on my Xbox. I have a dog called Polly, two fish, one rabbit and two budgies.

I don’t mind having a special heart but I really get frustrated and unhappy. I feel this way because I feel left out sometimes because of my heart condition as I can’t represent the school (in sports etc.) because I will get too tired.

When I grow up I want to be a vet and historian and my hobby will be maths. I feel kind of proud of what I’ve achieved but feel I haven’t done enough at school to feel proud. I talk to my teachers, mummy and my nan’s and they help me to feel better about it.

For details about our Handmade Hearts initiative, visit: https://www.lhm.org.uk/get-involved/fundraising/lhm-events/hmh/

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[heartlog]

My special handmade heart by Tia, age 5.

As part of our Handmade Hearts series, LHM’s young members talk about life with half a heart. To learn more about Handmade Hearts, click here.

I feel sad about my heart, I want it to get better, I know that I have a special handmade heart and that the doctors did amazing things to make it work and keep me alive. 

I had two open heart surgeries when I was a baby and was on a life support machine. I need another open heart surgery soon, I am scared about the cannula but it will make me stronger and I hope I will be able to keep up with my friends a bit better which will be great. My heart makes me very tired and I'm always hungry! I sometimes can't play with my friends because they are too quick, but I do get to do fun things like Stagecoach and swimming lessons, these help to keep me fit and grow stronger and they are very good as they let me rest when I get tired. I have to go to lots of hospital appointments but these can sometimes be fun as the doctors and nurses are nice and funny.

You can help LHM to continue supporting children and young adults with half a heart this October by making your very own #handmadehearts. For more info on how to get involved click here. Make, bake, sew and sell for children with Handmade Hearts!

[heartlog]

I'm glad to be home, mummy always tells me I'm doing well and doctors do too, but now my heart is starting to leak and that's kind of scary.

Hello, my name is Enzo and I'm nine years old.

I was born with hypoplastic left heart syndrome, also referred to as half a working heart. Here is a little story from me.

I'm just your typical lad or monkey as my mum would put it. I enjoy school and science is my favourite subject. I have friend’s and get on well with everyone. My only problem is I can’t always keep up or play out either. Having a special hand-made heart means I have to be extra careful with outdoor activities. I'm also on warfarin.

The cold weather isn't great for me and I can’t really breathe properly when it’s really cold, so mum and dad always wrap me up. I don't mind though. Sometimes when other kids are in just a jumper, I have to wear a big coat with hat, scarf and gloves.

I’ve had three open heart surgeries, but I only kind of remember one. I remember two things from this operation - going into a large white room and I also remember that mummy brought me some strawberries and one was so big all the doctors and nurses were amazed! It was well yummy!

I remember being away from my brother and sister but they always came up to visit and brought me toys. In fact my hospital bed was full of teddies and toys. I'm glad to be home, mummy always tells me I'm doing well and doctors do too, but now my heart is starting to leak and that's kind of scary. I now have to be checked a bit more and have regular ECGs which is kind of cool as I'm like a robot but it can be annoying when I need the toilette or sleep.

I feel very lucky to have good nurses and doctors, they're the best. Sometimes I am scared but they help me and always talk to me. My mum also always talks to me and explains. I’ve learnt to do things on my own and I know how to control my breathing now and when I need to rest. Mum always lets me on her computer to go through the Little Hearts Matter Facebook page and I get to see other kids like me and it’s nice to see as we don't know anyone local with a heart like mine, not even my doctor’s really know and that's why I go to a special hospital.

Every time I ask mum something and she isn't sure, or my teachers ask her, she replies "I’ll have a look or word with Little Hearts Matter." It’s nice to have somewhere to turn as I can feel alone sometimes. I’ve done things I was told I wouldn't be able to do, I used to be very poorly all the time too and always in hospital but the last few years I’ve done really well and no longer get really ill anymore (fingers crossed). As I'm getting older I understand more and I can help my family look after me more as now I'm aware of my heart etc. I don't let having half a heart stop me and I enjoy living a full life. Ok I have to miss out on a few things but I would rather be here than in hospital.

[heartlog]

Introducing Bill Brawn, the leading cardiac surgeon in the UK, who hand makes hearts.

Handmade Hearts is a month-long initiative ran by Little Hearts Matter to raise awareness of children with only half a working heart. And more specifically, to highlight the fact that children born with half a heart cannot survive without open heart surgery within the first few weeks of being born, and surgeons have to hand make a heart that can do the job of a healthy one.

Mr William Brawn is the leading cardiac surgeon in the UK for complex children’s heart surgery. Over the past two decades he has treated over 5,000 babies.  His work as a cardiac surgeon has enabled him to gain a huge insight into the fears and pressures on families living with complex heart disease.

Mr Brawn, has modified the first stage of the three-stage procedure which is used to improve the condition known as Hypoplastic Left Heart Syndrome, which was universally fatal within a few days of birth until around 20 years ago.

Little Hearts Matter supports families affected by all single ventricle heart conditions.  The charity has been in operation for over 20 years and Mr Brawn is its Vice President.

 Tell me about how you developed this type of surgery for heart children and the journey it has come on over the years.  

I began my career as a consultant in Australia 1980 where I was mainly working on cases where children had only one pumping chamber.  I came to Birmingham in the autumn of 1988 and decided to spearhead this type of heart surgery – known as the Norwood procedure – for the first time in the UK at Birmingham Children’s Hospital.   This was in fact the first centre in Europe to take on these procedures.  

During these early days surgery was to an extent experimental, high risk and associated with poor results.  The early 90’s were exciting as things began to take off with success.  I started to take my expertise and advice to other heart centres across both the UK and into Europe. Today the UK has one of the largest programmes in Europe and these types of operations account for around 30% of the cardiac workload in UK and US.   Today, at Birmingham Children’s Hospital we have the largest team in the UK performing surgery.

The first birthday is a milestone for any child but particularly so for children with complex heart conditions.  The highest risk is usually during the first month of life.  If at three months the baby is doing well the outcomes begin to dramatically increase.  In is down to experienced surgeons and supporting teams that in 2014 up to 80% of babies are reaching their first birthday.

What motivated you to work in the field of highly complex surgery for heart children and babies?

I really enjoy surgery and working with my hands – all the babies and children I work with effectively have hand-made hearts. The immediate feedback you get from treating babies can be incredible - often it can be just within seconds that you see an improvement in a child in intensive care.  

What is the youngest baby you’ve treated?  

Within an hour of being born. I have treated some babies that are born pre-term and immediately ventilated and then rushed into the operating theatre. Others are treated within four or five days of being born.  Open heart surgery on these new-born babies is complex and you have to give it all the time it needs and dedicate yourself to it.  Operations usually take around five hours but others can be much longer.  There is no typical day.  When we started there were just two surgeons.  Over the years we have grown and we now have four surgeons, which make a tremendous difference and the results reflect that. 

Can you put into words what the pressures must be like for families and children with these heart conditions? How does it affect you speaking to distressed families on a regular basis?

The stress for these families is immense and overwhelming.  It is absolutely shocking to be told your child has an incurable condition –the worst news you can receive as a new parent.  Life-changing decisions need to be made within days of being told. Understandably, it can put a huge strain on families and their relationships.  When facing these families I have to be balanced, professional and compassionate.  I am totally focused on achieving a positive outcome.  It is wonderful and rewarding to see so many of these young people doing so well today.  

Today, more young people are now reaching their teens and beyond. What have you learnt from the young people living with life-threatening heart conditions and how they cope day to day?

In a word ‘inspiring’.  They all carry the lifelong burden of heart problems but many seem to be living a good quality of life.  Some do have major difficulties and struggles and they all have to live with the knowledge that they have an incurable heart condition.  I am often amazed by their resilience to life and determination to live it to the full.  We have to remember that these young people are a relatively new but expanding group of heart children that are not just surviving but determined to live good lives.  They are trailblazers for a generation of heart children.

20 years ago what did you expect?  What do you see now?

At the beginning our focus was to save the lives of these babies and we hoped for a positive result.  This surgery is highly complex and does not offer a cure. We did not know if these children would reach their teens.  Today we have survival close to 80% which is one of our greatest achievements.  More importantly knowing that many of these young people are now living good lives, within the restrictions their heart condition creates, is wonderful to see.

Medicine and technology advances quickly – how do you think this will impact on these children in terms of surgery, life chances and lifestyle. What are your hopes for the next 20 years for these children and their families?  

The big issue is what happens to these children when their hearts start to fail which is a reality for all these children.  We need to have effective and sustainable ways of supporting or replacing their hearts.  There are not enough human hearts and many of these children are not put on the waiting list until they reach a critical point. Also, because they have had so much surgery before the immediate outcomes can carry more risk.

Technology is advancing at a rapid pace and human biologists have an important role to play. In 2013 more mechanical hearts were implanted than human hearts worldwide.  These mechanical hearts are advancing and I believe they could become what are known as ‘destination’ hearts as opposed to acting as a bridge. They are increasingly reliable and obviously don’t carry a risk of rejection by the body. Stem cell therapy is another advancing area that is already seeing the development of artificial tissue and could see us growing hearts.

I think the next 20 years will see some exciting changes.  Twenty years ago we couldn’t have imagined where we are today.  However, all these advances go hand in hand with surgical expertise which will always be needed.  This type of heart surgery is essentially a ‘hands on’ technical exercise.

What do you see as the biggest challenge/threat for these families today?

Living day to day with these heart conditions is a daily challenge.  Many of these children will have limitations.  We know now that it is not just the heart, the brain is also affected. We are beginning to understand that the brain is often not as well developed with these heart conditions – this could be due to the circulation of the heart before birth or as a result of surgery.  We need to raise awareness and understanding of these conditions to help these families. This is why Little Hearts Matter is vital.    

How do you think these children fit into a modern NHS today?

In terms of general medical care they fit in well. There is a structure in place for adults for CHD which is well organised but we can always do better.  The biggest issue will be around funding and how restrictions will impact on the current service.  There is of course a constant pressure in the fight for funds to develop what we do.

What, in your views, needs to change with regards to the current surgical treatment and the care of children with highly complex heart conditions?

I believe we need fewer expert centres that take on larger numbers of patients. This is a complex area of both surgery and care and highly experienced teams are essential. The more surgery you do the more experienced you become and that will ensure improved and safer outcomes for these children.  Survival alone is no longer enough – we must look at their quality of life.   To some extent the system today is set up as one that responds to pressure and, in my opinion, needs to change.

How long have you been involved with Little Hearts Matter? What motivated you to get involved?  How important do you think the charity is for these families?

I have known Suzie Hutchinson, Chief Executive of Little Hearts Matter since she began her career as a cardiac liaison sister on the children’s ward at Birmingham Children’s Hospital.  Suzie could clearly see the need for an organisation that would support these families with information and connect them to others.  I become involved from the word go and have been alongside the charity for over twenty years now.  This charity really is a lifeline to so many families.

https://www.lhm.org.uk/

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[heartlog]

After researching life with half a heart, we realised that we couldn’t possibly be absentee grandparents… We had to move to England to be with our grandchild.

When we first heard we were expecting our first grandchild we were living in France blissfully unaware of what lay ahead.

At that point I had no idea that my son was even in a steady relationship, let alone the notion of grandchildren coming along. So I had more or less given up on the prospect of grandparenthood.

Our son was visiting us when he received the news of the pregnancy. After the world stopped spinning we quietly settled down and contemplated our new future, excitedly envisaging family summers playing with our grandchildren, even imagining how two lively kids would love climbing our trees and jumping into the pool and how we would introduce them to the lifestyle and culture of southern France.

And then… Bang! A scan had revealed an anomaly in the unborn heart and the world started spinning again!

A congenital heart defect was diagnosed and the options were slowly revealed - termination or an uncertain delivery, possibly, by an equally uncertain future. My son and his partner made the only decision that they possibly could - give their baby a chance, no matter how slim that may be.

Max was born at St Mary's in Manchester and was immediately transferred to Alder Hey, where, a few days later, he underwent his first stage open heart surgery. Owing to complications mom was kept at St Mary's and had no chance to hold and comfort her newborn - dad was by Max's side throughout. Our first visit was a short time later and the instant I saw Max through the window of his ward my heart stopped and I felt like a hole had opened up inside me - there he was safely cocooned in his oxygen capsule with pipes seemingly coming from everywhere and beeps and whistles sounding all around, I blubbed like a baby - how was this journey going to go?

We were on hand that first Christmas and spent most of it camped in our campervan in Alder Hey car park shuttling between Ward K2 and Ronald Mcdonald House, offering whatever support and practical assistance we could but we ultimately had to return to France. Over the next couple of years we had infrequent trips to England each time wondering if Max would remember us when we visited. The first time we met again he pressed himself so hard into my chest that it felt he was trying to become part of me, and of course - he is!

Max's big brother James slowly came to trust us with his fragile little brother, eventually realizing that we weren't going to get between them and only wanted to be part of his life.

On our return to France we did the only thing we could do - we researched HLHS and the possible outcomes and an unspoken conversation took place between us, followed by an equally unspoken decision that we couldn't possibly be absentee grandparents and for all that we loved our French lifestyle we would never be able to fully share it with our family so we had to move to England. By this time our Skype conversations with our grandson Max were becoming more painful to terminate - but what a connection that provided while we were apart.

I still marvel at and give thanks to the hard work, skill, courage and dedication of the cardiac team at Alder Hey who, during a 13 hour procedure during which they were working on something about the size of a pigeon’s egg (Max’s heart), gave Max his chance - heroes one and all.

And France - do we miss it? Of course we do. Do we regret giving up a quiet, peaceful, sunny lifestyle for the chaos, uncertainty and stress that comes with having a grandchild with HLHS and three other grandchildren (oh yes - sister Willow came along about 15 months ago!) - do we hell as like!

When Max had his second stage Norwood he was a model patient - four weeks in hospital if I recall - but last year his Fontan was not so easy and he had a tough time of it after the procedure meaning he spent several weeks in and out of HDU fighting infection after infection and needing mom and dad near him. During this time we moved into our son's house and kept things stable for the other two kids - school runs, trips to the park, helping with homework and taking them to Alder Hey at weekends to be with mom and dad - all the practical things that we came back to England to provide.So how’s Max today?  He's eight now and continues to fill us with joy and inspiration - not complaining, asking for nothing, loving school (mostly!), getting on with being a kid and not letting a little thing like half a working heart get in the way of his life. He's the apple of grandma's eye and can do no wrong!

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[heartlog]

At 3.23am my mobile rang right by me and I heard this happy northern accent saying that a potential heart was available!

Our gorgeous Oliver was always a very poor child.

He was born with hypoplastic left heart syndrome (also known as half a working heart) and chronic regurgitation of his tricuspid valve.

Oli lived in chronic heart failure from day one, until two years of age. He endured four open heart surgeries, two cardiac arrests, DVT, Endocarditis and had a very high risk mechanical valve fitted within half of his heart.

But we always kept positive and at aged seven months Oli went to nursery, I returned to work and outside our front door we craved to try and be as normal as possible. Our dream for Oli was to live a life full of fun, love and laughter - although every regular clinic we were reminded that one day soon Oli would definitely need a heart transplant. Oli received only palliative care and what our amazing medics were doing was literally bridging time for Oliver until a transplant was imminent.

Oliver was getting bluer and bluer, he relied totally on his big buggy and gasped so much when he went up the stairs. Our amazing team in Birmingham sent us up to the amazing Freeman in Newcastle upon Tyne when Oli was about two years old for a transplant assessment. To our total despair we were told a transplant was not possible due to raging high antibodies so this is when Oliver had his mechanical valve fitted. Oliver was initially well but became very ill due to a nasty infection, he fought hard and we eventually returned home two months later.

Miraculously, Oliver coped amazingly with sats of barely 60%, but this was Oli proving that we were all individuals and that we all cope differently under different circumstances. At one point he even got discharged with sats of late 50's - Oli was Oli and no amount of nasal specs full of oxygen helped.

Oliver started reception school in September 2012, and tried hard to keep up although his health was deteriorating drastically. That Christmas we visited the Freeman again in view of being listed and just after Christmas we had an amazing phone call to say that, by a complete miracle Oliver's raging high antibodies had vanished – maybe my constant prayers had worked! Tears , anxiety and reality was kicking in and in February 2013 Adam and I drove a 500 mile round trip to sign Oliver's consent form. Oliver was now on the national heart transplant list.

This, we feel was the scariest moment of our life. So many friends and family were awkwardly congratulating us but deep down we were petrified! To us there was no going back as in hoping for further surgery, a new drug trial etc. and we were now on a journey of fate and wondering when our call would come. Would Oliver live or die? These were harsh words to ask, but in the transplant world, these were normal questions!

Oli kept on at school as he loved to be with his friends and we were so keen for life to be as normal as possible. I would collect Oli each day at 2pm and take him for a little treat, which was a chocolate Freddo, really I wanted to buy him the world. Oli even competed in his first ever school Sports Day, I could have cried. During Oliver's last day of term I said to his teachers that I hoped very much that I would be seeing them in September, they just smiled but I so meant it. I needed our call soon and I needed it very soon while Oliver was unbelievably keeping so well in himself. Chronic heart failure yes, but coughs and colds etc. seemed to stay away thank the good Lord!

On August 18th 2013 Oliver had the worst day of his little life. He screamed all day and was so irritable, for the first time in years I cuddled him to sleep in our bed in the afternoon having had one of his melatonin tablets as I honestly believed Oliver would collapse in sheer exhaustion. But he slept for 2-3 hours and woke up as a new little man, ate a lovely Sunday roast and had a warm bath where I cut his toe nails and even cleaned his ears! I found this odd as this wasn't a school night and I normally would have left the big clean for a different day… Maybe I knew that something was going to happen?  

Adam left for work and we all went to bed and Oli lay by me very peacefully and I lay next to him listening to his mechanical valve beating and I felt so sad, I even sobbed. Secretly life was getting harder, Oliver was so hyperactive and irritable and I was shattered and scared. I had done various interviews on radio and TV and the confident happy woman with pink lippy was a real wreck! I was desperate for that phone call, but truly realised a gorgeous person would have to die to allow Oli to live.

Quite strangely I sent a text to my very worried mum at midnight saying I was fine but just so worried, Oliver needs his heart very soon.  Before falling asleep I heard Adam return from work and asked him to sleep in Oliver's room as at last he was settled. 

At 3.23am my mobile rang right by me… And I knew, I just knew! My saliva vanished from my mouth and I heard this happy northern accent saying that a potential heart was available!

I was told to keep calm, have a shower and that transport would be with us in an hour. I woke Adam shaking madly, phoned my mum as my younger son was in bed (bless him) so I needed her to come round. I then stood on the landing and literally sobbed, all I could visualise was our amazing donor family, and how their loved one would still be alive with machines - what a decision! Still sobbing in the shower I then kicked into strong mode. My bag was already packed so it was now time to explain to Oliver that we were off on an exciting journey. We were blue lighted to Manchester airport and took a private jet to Newcastle. Daddy drove up separately as we needed our car.

Arriving in hospital at about 7am we walked in with the new nurses that day, everyone was so happy and welcoming! They took Oli’s blood etc. and then he went off to the play room. Video recording Oliver seemed a vital thing to do, and we then had our news - the heart was very good! Oli was then gowned up and we were off to theatre. I hate the theatre so made a quick exit sobbing as usual.

Twelve hours later we were allowed to see our beautiful Oliver. The ventilator and infusions just didn't seem to be there, although obviously they were. We just saw Oli with pink lips, pink cuticles and looking so different, with saturations of high 90's - something we had never seen before!

Oli stayed in a vacuumed air tight room in PICU for three days, and so did we! Down to the ward seemed such a big event and Oli became so poorly, sick so weak and the major drugs were literally making him vomit on an empty stomach. I cannot describe just how sick he was and I felt so scared! I honestly thought one evening how on earth can Oli ever survive this? What had we allowed him to go through? I actually sobbed on a nurses shoulder in the middle of the night and I remember her saying all the kiddies have this period and that he will pull through. She said that each day he would get stronger. Our lovely nurse Carol was correct! On day five Oli was eating curry, wanting to play on his Xbox and by day six he was in the gym – what a miracle!

We learnt all about Oliver's medicines and by day 15 the ‘home’ word was mentioned. Oli went down for a biopsy due to the past history of high antibodies, so daddy went to pack up our room in the flat and I thought I would start to tidy our room just in case we were going home. Our lovely transplant nurse came in looking worried and explained that Oliver was in acute rejection. We were heartbroken and we sort of knew something was going to happen as Oli had never done things simple! A big dose of drugs, which Oli struggled with, and back in isolation was so sad but everyone around us remained positive although our consultant was very concerned and realistic to us that this was not good - Oliver's nasty antibodies had returned.

Constant bloods, a further biopsy, the antibodies were static but not going down and we were to be back in clinic every Monday for the next 12 weeks!

Eventually Oliver's antibodies slowly decreased. He kept really well and he was back to school after the October half term, part-time and after Christmas he was back full time. Physically tired but loving every minute of his new life. We were told that Oliver's fitness will improve slowly as he had never used his little muscles before.

Oliver deep down missed out on his little life so much due to being in hospital for so long. He never spoke or walked until about aged three, then by the young age of five fought hard to survive a heart transplant.

All we really want now is for Oli to be a little boy, to play with his peers and use his beautiful new heart to the fullest!

School has always been an issue through lack of understanding and expectations of Oli so we moved Oli to a beautiful new small school in September 2014 and Oliver is thriving! He's so happy and academically he is progressing, although this has never been a big issue as happiness, fun and politeness is all we ever want for Oli. He is now on his own accord, stays for tea at school one evening a week, attends a couple of clubs, is quite literally sports mad and generally loves school.

We feel the luckiest family in the world that our gorgeous Oli has been given the gift of life. Oli and his gorgeous little brother are our lives and we can never ever thank our amazing donor family enough.  Ever! We think about them every day and write to them, and will cherish our letter from them.

Organ donation is such a sensitive subject, but a subject I feel very strongly that we should all talk about honestly and openly when we are all alive and happy. Then in the very rare circumstance we may be in the heart breaking situation with our loved one their decision is made. To give the gift of life is the most amazing thing ever – it’s life changing. ‘Thank you’ will never ever be big enough words to say to Oli's amazing Donor and family.

[heartlog]

“The operation had failed and they told us that Jordan would have to go to another hospital, 100 miles away.”

It was Wednesday 11th January 2012. Me and my partner Richard were on our way to the hospital to have a 21 week pregnancy scan. We were excited for the big scan to find out what we were having. I remember biting my nails and feeling nervous.

“You are having a baby boy.” the midwife said, but she had a very confused and worried look on her face. She said: “I'm worried about your baby's heart.” She explained something was not right with his heart and only one ventricle had developed. We both went home that day with lots of questions and worries and arranged an appointment at Royal Victoria Hospital in Belfast the following Wednesday.

Wednesday 18th January 2012 on my 20th birthday we travelled 100 miles to Belfast to see a cardiologist. He diagnosed our son with Hypoplastic Right Heart Syndrome (HLHS) and our heart journey began.

I was given two options that day; I had a choice to terminate the pregnancy or give my unborn baby a chance in life knowing he would have to have a series of three open heart surgeries to survive. I remember the tears rolling down my face but Richard and I knew we were going to give our son a chance in life.

The rest of my pregnancy was an emotional rollercoaster. I had lost all the excitement I had and it reality hit me that my son was going to be born with half a heart. I did so much research to try and understand it all.  Some of it was really scary, but I got a basic knowledge of the life we were going to be facing. 

On 14th May 2012 I was induced at 39 weeks at Royal Victoria Hospital, 100 miles away from home, and the next day my waters broke and our beautiful baby boy made his entrance into the world, weighing a healthy 7lbs 1oz. I only got to hold Jordan for a few quick seconds before he was taken to neonatal. We didn't get to see him till 12 that night. It felt like forever.

Jordan spent one week in neonatal and then five further weeks in hospital. He had his first open heart surgery at six weeks old the P.A banding. Kissing my son goodbye in theatre was the hardest thing ever. We got the call around four hours later that Jordan was back in ICU.  It was so scary seeing him so tiny surrounded by lots of big machinery. One week later he was home for the first time at seven weeks old.

We knew that Jordan would be having more surgery in the near future so when we got him home we enjoyed every minute and treasured him.

Jordan did really well but nine months later we noticed his saturation levels dropping and he was becoming more breathless. He had a cardiac cath done just before his first birthday and this showed he was ready for the second stage, the Glenn procedure. Jordan had his Glenn procedure on Monday 17th June 2013.  We were told this surgery would take approximately five hours, but the hours passed and we started getting really unsettled as it was taking longer than they thought. Another two hours passed and they finally called, so we went straight to recovery to see him. He was really purple and looked swollen.

Jordan’s cardiologist came to speak to us and explained that his pulmonary pressure (hypertension) was quite high and that he wasn’t coping well with the surgery.

We tried to stay calm and positive but things just kept getting worse. Jordan had to be ventilated again and they started new medication, they also had to bring out a machine they said they had not used in years. But this still did not help. Jordan was taken to PICU and was put on further medication but nothing brought the pressures down. They told us he had high pressure in the lungs, which could possibly be hereditary and he was just rejecting the surgery. This went on for four days. On the Thursday night the surgeon came to see Jordan just to make sure they didn't miss anything. They did another echo and put in a chest drain. At this point I actually thought we were going to lose our son.

At 3am that morning the cardiologist and a surgeon called us into a small room, we were so scared. They told us that Jordan was so ill because the operation failed. They told us Jordan would have to go to another hospital 100 miles away, to Dublin, to have his open heart procedure (the Glenn) redone.

Jordan was taken to Dublin via emergency services and taken straight to surgery. He then had his operation redone on Saturday 22nd June 2013. He was in theatre for seven hours and all went well and he recovered well. We went back to Belfast five days later and stayed for four weeks and then went to hospital for a week before coming home. He had a lot of medication to be weaned off and most days he was miserable.

We were relieved to be home with our miracle baby and we knew in the future he would have to have the third stage Fontan procedure, but we were told this would be when he was four/five years old. However, only 14 months on from the Glenn procedure, Jordan started deteriorating again with low saturation, no appetite, weight loss and suffering from breathlessness. He had a cardiac cath in January 2014 and this again showed he was ready for the Fontan procedure in the summer.

In August 2015 we went to Dublin for Jordan’s Fontan procedure. We stayed really positive that Jordan would stay strong for this big surgery and seven hours later he was back in ICU – we were so relieved.

Jordan sailed through recovery and was home within three weeks. The surgeons made a fenestration hole during the Fontan so his lungs could cope well after surgery.  The fenestration is meant to close itself within six months and then saturation levels normally improve. However, nine months post Fontan, Jordan was still blue and had no appetite and his saturations were in the low 70s. It was decided that he was to have the hole closed.

Jordan had the fenestration hole closed through his groin on 21st May 2016. I had never seen Jordan as happy, heathy and pink as he looked this time around. It’s really great to see him being able to do things other children his age can do. He can see the difference in himself too, which is just amazing.

Jordan is now a happy little four year old. He takes medication daily and loves to sing and play with his superhero toys. He tends to struggle in the colder months but he never lets anything hold him back.  He has the most beautiful eyes, just like an angel and we never knew as much about the human heart as we do now.

We wouldn't change our journey for the world. Jordan has half a heart, but he is full of life and love.

�|�"�r�

[heartlog]

When I saw the flyer for the Big Hearted Swimathon I knew this could be the way back into the pool; I would do it for Sean

When we saw that Little Hearts Matter wanted people to take part in the Big Hearted Swimathon challenge, we looked at it and thought this could be the perfect way back into the swimming pool and we could do something positive in our little boy’s memory to raise money for a good cause.

We lost our beautiful, funny, and very brave 4 year old little boy Sean in 2012 through complications following his fontan surgery. Our lives were completely broken and felt that they just stopped. One of Sean’s favourite activities was swimming, I took him every week to swim in my friend’s hydro therapy pool, it was warm so he never got cold and in staying warm he did not get so tired. He was Spiderman doing the biggest jumps in; he swam about freely, relaxed on inflatable rings, he was so confident and really enjoyed this time.

In hospital when he was very poorly he said to us he would never swim again, we tried to be brave and told him one day when he was better he would of course go swimming again. I think this stuck hard with me after he died, the guilt I felt at the thought of ever getting back in the swimming pool without him was so overwhelming I avoided the pool at all cost.

In the summer of 2014 I knew that as my little girl was starting school she would be doing swimming lessons and somehow I had to face the prospect of going back into the swimming pool. Sean’s swimming teacher very kindly offered to take me back into the building at a quiet time to sit and reflect and help me overcome the fear of going back in. I had my tears on pool side and slowly it felt OK and some normality around my daughter going for her lessons was established, but I myself could still not bring myself to get back in the water.

In early summer 2015 when I saw the flyer for the Big Hearted Swimathon I knew this could be the way back into the pool; I would do it for Sean. Then I had the dilemma of seeing that in order to swim the channel I would actually need to complete 1,416 lengths of the 25 meter pool. I’m not the strongest of swimmers at all so this seemed like an impossible task so one evening I put a little status on my Facebook just exploring the idea with my friends of having one or two volunteers to help me complete the lengths. I did not expect what happened next at all and I was completely overwhelmed by the responses from people. My daughter Emily and I had decided we were going to do this together for Sean and she to put a status on her Facebook and before we knew it we had 22 Adults, 15 teen friends of Emily’s and 28 children volunteering to swim some lengths. Many of the children were friends of Sean’s from his class at school which was incredibly heart-warming to us. Everyone was so keen to take part in the Swimathon.

This was amazing, but how were we going to manage to keep track of how many lengths people were doing and bring this number together in order to know when we had reached the 1,416 lengths? The sport centre very kindly agreed to put a file on the front desk and everyone who came into swim would record their lengths. Even kinder though they said everyone who was swimming for Sean could swim for free.

Team Sean was created and our local paper were keen to run the story and follow our progress. This was great as we were also raising much needed awareness for a very important charity and so a very kind photographer came out and took a lovely photo of some of Team Sean for the launch of “Swim for Sean”.

On the 1st June 2015 I climbed in to the pool and started to swim, it was quite an emotional moment but so quiet and relaxing I actually enjoyed my first swim, surprising myself at swimming 40 lengths and knowing it was all for Sean.

Miraculously within the first 3 days Team Sean had completed the first channel swim which completely shocked me as we still had 12 weeks to do this over. Credit to everyone they simply carried on going and several of Team Sean swimmers, including Emily and myself, decided actually we would set our own personal challenges to attempt the full 1,416 lengths. When we worked it out we needed to swim 118 lengths per week over the 12 weeks we realised this was achievable and that is what we did.

In order to promote our “Swim for Sean” charity challenge we set up a just giving page through Virgin and set up a face book event page to keep all our followers and sponsors updated on our progress. Team Sean swam an unbelievable 23.852 lengths actually crossing the channel an incredible 16 times.

On the final day of the swim the sports centre kindly allowed us to hire the pool for free so those of Team Sean who needed to could complete their lengths or just do a few more to add to their own personal targets. We had a really lovely swim. We had some Team Sean cupcakes made for everyone after as a way of saying thank you. We certainly had an incredible experience and raised over £3,000 with gift aid for Little Hearts Matter. Team Sean were fantastic.

If you are thinking because you are not a strong swimmer you could not do this challenge, think again. If you break the lengths down over the 12 weeks its very achievable, and even better if you can rope in some of your friends and family, you will get fit, feel a real sense of achievement, raise money for a very worth while charity and above all have lots of fun. Good luck!

If you would like to take part in this year’s Big Hearted Swimathon please visit our website for more information. Let’s see how many times we can swim across the channel this year! https://www.lhm.org.uk/get-involved/fundraising/lhm-events/swim/

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[heartlog]

After hearing my baby had half a working heart, I picked up a pen and poured out my heart to my diary.

Tuesday 3rd May 2011 was the day of my 20 week scan; the date my world came crashing down around me; the date that our journey as a heart family began.  

That night, as I sat in bed, unable to sleep with all the thoughts and fears that were whizzing around in my head, I picked up a pen and poured out my heart to my diary – the first of many entries trying to make sense of this new world I found myself in.

In the early days following our daughter Jessica’s diagnosis with hypoplastic left heart syndrome (HLHS), we kept family and friends updated via email. However, things were happening quickly – from being told that Jessica’s particular anatomy meant surgery was unlikely to be a viable option, to being offered the chance to have in-utero surgery and then that surgery taking place.

We had so many friends and family members wanting updates on how Jessica was getting on and email no longer seemed the best way of keeping everyone up to date.  And so we started writing Jessica’s Journey - a blog sharing Jessica’s progress from diagnosis, through to her arrival in the world and the surgeries that followed.

Writing has always been my way of processing my thoughts. During the rollercoaster ride of that first year, I found writing Jessica’s blog incredibly cathartic.  However, as time went on, I found myself wanting somewhere where I could share my own reflections as a heart parent and not just updates on how my heart child was getting on.  It didn’t feel right to share these on Jessica’s blog and so I started my own blog - Little Hearts, Big Love.

What started out as just my own space to reflect soon became much more.  I discovered a whole community of other parent bloggers and started blogging about family life in general as well as life as a heart family. As I started to get to know other bloggers in the blogging community, I began to connect with other heart parent bloggers too and decided to start Heart to Heart, a monthly link up (where bloggers link up their blog posts) for heart families to share their stories.  It’s a small community, but a supportive one. For me, one of the biggest things that has helped us along our journey has been connecting with other heart families – the ones with older children who have given us hope; those with children of the same age who have travelled alongside us; and now those with younger children who I hope we help by sharing our story.  Just knowing that we are not alone with the fears, worries and concerns that come with being a heart family; that there are so many others out there who understand makes a huge difference.

Earlier this month, I was thrilled to discover that my blog had been shortlisted for the Brilliance in Blogging (BiBs) awards in the Family category.  To know that my blog has touched others to the extent that they have nominated me for an award is just amazing, especially given the sheer number of parenting blogs out there.  Through my blog, I try to raise awareness of congenital heart defects, the importance of early detection; to connect with other heart families and to also show that even with all the worries that comes with having a heart child, our family life is mostly quite normal.  I don’t yet know if my blog will make it through to the finals of the BiBs but it would be wonderful if it does.  It’s certainly not something I ever imagined could happen when I first put pen to paper five years ago!

Whether my blog wins an award or not though, I’m immensely thankful for the way in which blogging has helped me so far on the journey.  It’s been my outlet during the rollercoaster ride through those days in hospital; a record of all the milestone moments and memories that we’ve created together as a family and a means of becoming part of a wonderfully supportive and welcoming community.  

Whilst our family life for the last few years has been fairly normal (hospital visits aside), we know that we are about to step on that rollercoaster ride again as Jessica is due to have her Fontan procedure at some point in the future.  I’m sure that blogging through that rollercoaster ride will be part of my own way of coping with it – helping me to offload my thoughts so I can be the strong mummy that my beautiful girl will need me to be.

��T@!�

[heartlog]

I swam the length of the English Channel to raise awareness of the condition my baby died from

Each year from June – August, Little Hearts Matter (LHM) encourages people to raise money for children with half a heart by taking on a swimming challenge called the Big Hearted Swimathon. The charity aims to attract lots of swimmers to take part in the challenge at their local pool. Collectively, LHM aims for its swimmers to swim the distance of the English Channel.

However, I went a step further. I decided to swim the whole distance myself! This is my story.

My name is Tracy (I’m in the middle) and I took part in the Big Hearted Swimathon last year with my sister Cara and friend Charlotte.

Back in 2013 my husband Tom and I found out our first daughter Orla was going to be born with only half a working heart - or Hypoplastic Left Heart Sydrome (HLHS) to be exact – along with many other medical problems. Any parent or family member who has been through this will know about the roller-coaster of emotions such a diagnosis brings. Despite doctors fears for her survival we were lucky enough to have Orla in this world for four months. During all this time the support we got from LHM and other organisations was amazing. It is for this reason that I, and family members strongly support the charity.

When my sister and I saw the Swimathon advertised we jumped at the chance. We both love to swim. My friend Charlotte also decided to join us. While Cara was confident in her ability to swim the entire length of the Channel, Charlotte and I were less adventurous and decided to aim for at least half the distance.

Along came 1st June and we all headed to the pool for the first of many swims, and boy was it hard. I only managed 400m that day but the more we went the easier it got. In the end we were all easily swimming 1500m in an hour. So Charlotte and I soon decided to aim for the whole distance.

Our tips are to do it as a group and try to go together as much as possible as the encouragement and competitive streak really spurred us all on. We also worked out how much we would need to do over the weeks to set ourselves mini goals to achieve. Oh and set our sights on the celebratory night out we had planned for the 31st August.

I think the biggest thing is to remember that you don’t have to do the whole distance but every little bit of advertising and fundraising for LHM helps our little heart warriors. However, you will be surprised how much you will achieve. We all certainly did, and feel proud to be able to say we have swam the length of the Channel for charity.

One final bonus, we all lost weight and felt so much healthier.

So if you’re thinking of doing it we say GO FOR IT!

For more information about the Big Hearted Swimathon, https://www.lhm.org.uk/get-involved/fundraising/lhm-events/swim/

[heartlog]

LHM has been there for help, support and guidance ever since we found out that Grace has half a heart… We are determined to continue raising money for LHM and hopefully this will inspire others to do the same!

It was at our 20 week scan that we found out Grace had Hypoplastic Left Heart Syndrome (HLHS); half a working heart. A scan that we thought would be routine turned into upset, uncertainty and changed our outlook on life forever.

After struggling to get pregnant and undergoing two IVF cycles, it was in April 2013 when we found out that Jo was pregnant, and we were delighted. The pregnancy progressed well until the 20 week scan where we were told that the baby was in the wrong position for them to see the heart clearly. We were referred to a specialist in Gloucester two weeks later.  

At that second appointment, the doctor told us that one of our baby’s heart chambers was missing and explained she had a condition called HLHS. At this point we were in total shock; we had never heard of this before and couldn’t believe this was happening to us. We were told we would be referred to Bristol Children’s hospital for an official diagnosis three days later.

With support from friends, family and from people we were put in touch with that also had children with HLHS, the remainder of the pregnancy carried on relatively smoothly. We knew we had a mountain to climb once Grace was born, we knew we would be in hospital for several weeks and that Grace would have to undertake two open heart surgeries within the first few months of her life. Grace was born on 1st January 2014, the best New Year’s present we could have wished for. Four days later she had her Norwood (an open heart operation) and finally at the end of January we took her home for the first time.

Spending that month in hospital and the subsequent help and support we have received from so many fabulous people and organisations, left us with an overwhelming urge to try and give something back. We decided that each year we should do at least one fundraising event, and to try do something different each time and to direct the funds back to those that help us and other families going through similar traumatic experiences.

In October 2014, roping in friends and family, we took a stall at our local Stroud Farmers market to take part in the Handmade Hearts cake sale. A combination of cake sales, raffle and selling handmade hearts raised a fantastic £1,250 for Little Hearts Matter (LHM). We spoke to the local Stroud paper and they ran a story on Grace highlighting her condition and the support given by organisations such as LHM.

In March, Ben and Chris (Jo’s brother) ran the Bath Half Marathon on behalf of the Bristol Children’s Hospital. Through sponsorship we managed to raise £1,200, heavily promoting a Just Giving page on Facebook and inviting friends, family and work colleagues to contribute. In October, Jo ran the Stroud Half Marathon with a friend raising around £1,000 for LHM.

Looking to do something a little different, in December 2015 we organised along with our neighbour, a Children’s Fun Day, raising money jointly with Meningitis Now. Hiring our local village hall, we had Christmas Stalls, Tea and cake, Children’s entertainment and a bouncy castle. The afternoon raised £800 split between the British Heart Foundation and Meningitis Now. Even a friend of ours, touched by Grace and her story, set up a Winter Wonderland in the back of his garden for local children and parents to donate. All proceeds again went to LHM.

We are currently thinking of this year’s challenges.  Ben and Beatrice will be running the Stroud Half Marathon again, proceeds will be towards LHM. Jo is planning to hold a coffee morning with Teddy Bear’s picnic in the spring; mums will be able to come and have tea and cake whilst children can bring their favourite teddy! Each year we hold a Christmas party for friends, this year we think that we will ask each to donate £10 rather than bring a bottle.

There are so many worthy charities out there, so many are vying for your fundraising activity. We have decided to concentrate our efforts on those that have helped us through the last two years. Little Hearts Matter has been there for help, support and guidance ever since we found out that Grace has half a heart. The care we have had from the doctors, nurses and surgeons at Bristol Children’s Hospital has been amazing. We are determined to continue raising money for LHM and hopefully this will inspire others to do the same!

If you would like to take part in ‘Handmade Hearts’ please visit the Little Hearts Matter Website https://www.lhm.org.uk/get-involved/fundraising/lhm-events/hmh/

    �ѬM�� 

[heartlog]

My baby was only three days old when he had an open heart operation.

A few minutes into my pregnancy scan, the sonographer told us to go and get a drink and to come back shortly as she couldn't get a clear view of the heart. 

I think we knew then that something wasn't right. 

Once we returned we were told that the left side of our baby's heart hadn't developed properly and that we were being referred to the Foetal Medicine Unit. Quite honestly we felt like our world had crumbled, I can only describe it as abject despair. We were utterly lost and just felt so helpless.

We had to wait two weeks for an appointment for an actual diagnosis but by this point we knew what they would say. Our baby had Hypoplastic Left Heart Syndrome (HLHS), also known as half a working heart, and we had three options: to terminate the pregnancy, to continue with the pregnancy and let nature take its course or to go ahead with the three stages of surgery. I remember feeling so angry that this was a decision we even had to face but it was a no brainer for us, we wanted to give our baby a chance, after all, he'd got this far.

The rest of the pregnancy was hard. We tried to balance being positive but realistic at the same time. I remember something one of the wonderful liaison nurses said that really resonated with me: "Enjoy and be grateful for your beautiful baby for as long as you have him". I knew then that we would take it a day at a time and love him as fiercely as possible. What more could we do?!

Finlay (meaning fair warrior) was born at full term on 02.08.07 weighing in at a healthy 7lb 8oz. It was a wonderful natural birth and we got to hold him for a blissful few minutes before he was whisked away to Neonatal unit (NNU).

The next day he was transferred to Birmingham Children’s Hospital (BCH) which was fortunately just 15 minutes away. Fin had the Norwood procedure when he was three days old.

Saying goodbye to your child as they are taken to theatre is nothing short of horrendous but we felt reassured that he was in the capable hands of Doctor Brawn. We eventually got the phone call to say all went well and we could finally go to see him. Miraculously we were home with our precious boy just two weeks later.

The next six months were spent enjoying our baby. Fin did well considering all he had been through and everyone completely doted on him. When he was four months old he had a cardiac catheter and the results showed he was ready for the next stage of surgery. He was admitted to hospital for the CP Shunt when he was six months old. Again the surgery went well and we were home within 10 days! This time we finally began to relax! We knew he would need the Fontan Procedure in the future but for now we could be a 'normal' family. Fin was a very happy, contented baby and toddler. We had regular check-ups at BCH and pottered along nicely until the time came that he began to struggle more and more. Fin was three and a half when he was admitted for his Fontan. It felt like such a long time since we had all been through this and now we had the added complication of actually explaining to Fin what was going to happen. His dad and I were absolutely dreading it but the thought of him not being blue, being able to run with friends at pre-school and maybe manage a flight of stairs filled us with hope! There was no denying he was struggling, we wanted life to be easier for him but at the same time, thinking of our son enduring open heart surgery and recovery for a third time was just awful.

After his admission date being cancelled numerous times, we finally arrived at BCH on 4th Feb 2011, but this time things didn't run so smoothly.

As we live locally we hadn't had parent accommodation previously but this time I was heavily pregnant with Fin’s sister. BCH allowed us to have a room which meant we never had to leave Fin and there was a bed for me when I needed it. 

The surgery itself went ok, apart from a heavy bleed from a ruptured aorta so it took longer than expected. A very stressful day! When we went down to Intensive Care (PICU) to see him he didn't wake up for hours, we were terrified! He eventually came round and the road to recovery began. We were there six weeks in total and in that time Fin had his Fontan, a cardiac catheter, an incident with a chest drain, was put on the MCT diet and featured on the BBC news. Whew!

Following the Fontan, Fin was draining A LOT of pleural fluid. His sats were peaking at a disappointing mid 70s. It felt like it had all been for nothing. Doctor Stumper decided to re cath him. During the procedure he inserted a stent into the left pulmonary artery in order to reduce the pleural effusions.

Things very gradually started to improve until Fin’s dad accidently leant on one of his chest drains - absolute nightmare! He obviously felt awful. Poor thing! (Fin still likes to remind him of this!) Fortunately Fin didn't have to go back to theatre as part of the drain was still remaining in his lung.

At this point it felt like we would never leave, the Doctor’s thought it was funny to keep reminding me they don't deliver babies...I was getting closer and closer to my due date!

Finally, totally unexpectedly one of the Doctors said he was happy for the last drain to come out and we could go home! I promptly burst into tears and repeatedly asked: “Are you sure?!” I know compared to some families six weeks is nothing, but we were so happy to know this chapter was over. Ok, we had to go back in a few days later as they thought he needed a drain putting back in, but thank goodness we swerved that one and got to go home...again!

Fin’s baby sister, Kitty, was born six weeks later and Fin finally said goodbye to the MCT diet.

Over the next few months we didn't really see any improvement in Fin’s colour or activity levels. He had another catheter in the July to reduce the size of his fenestration stent but again, no real improvement.

Fin started school but still struggled with minimal exertion. Therefore he went back to BCH in December for yet another catheter to almost completely close the fenestration. This time we noticed a bigger difference, he found things so much more manageable. It was wonderful, the best Christmas present ever!

Fin is eight and a half now and is doing good. He enjoys school and is performing well in all of his subjects. He has good days and bad days and tends to struggle more during the colder months. It has taken a while for teachers to realise that his condition affects him in so many ways. People tend to think he is cured because you can't 'see' his disability. Not the case: he gets exhausted, particularly near the end of each term, he sometimes suffers with leg pains at night, he finds it hard to concentrate and feels increasingly frustrated when he can't keep up with playground games. Despite all of this, Fin never lets his condition hold him back. He doesn't dwell on it and never feels sorry for himself. His teachers admire him and we are always told he is a 'tryer'! He was recently elected to be on his school council, he got a headteachers award for being an excellent role model and a gold badge for 100% effort! Obviously we are bursting with pride for his determination and tenacity.

As his parents we don't want his heart condition to define him. First and foremost Fin is a happy, confident, polite and extremely funny little boy. He plays the guitar, is a fantastic mimic and has dance moves that Michael Jackson would've envied. He loves Star Wars, going out on his scooter, Liverpool Football Club and family film night....oh and he just so happens to have half a heart!

[heartlog]

After two miscarriages I fell pregnant again, with a baby that had only half a working heart.

We found out at the 20 week scan that there was something wrong with our baby’s heart. A week or so later we saw a specialist who confirmed that it was Pulmonary Atresia, in short, our baby would only have half a working heart.  

We had already experienced two miscarriages by this point and I can honestly say we were relieved when we were told about the surgical options to give our baby a chance of life. At least our baby had a chance. Without giving it too much thought we knew we would be prepared to do whatever it took to give our baby the best possible chance of a good outcome.

I was monitored regularly throughout the pregnancy and all seemed to be going well. I had been booked in for an induction in Bristol on the 27th December. We were planning to have a quiet Christmas and then prepare ourselves to meet our new arrival and face whatever challenges it brought.

I went to a party on the 30th November and danced the night away. Despite being eight months pregnant I felt great!  The next morning I woke up and felt my waters go.  This was definitely not in the plan! I was admitted to our local hospital in Newport and once they were confident my waters had gone I was on my way to Bristol, in an ambulance, on blue lights!  I wasn’t in labour but the look on the paramedics face told me they were going to get me there as soon as was humanly possible. They didn’t want a premature cardiac baby being born in the back of their ambulance!

Once in Bristol, the plan was to monitor me and try and keep the baby in as long as possible.  I had lots of chats with the pediatric team. I was concerned that the baby wouldn’t be big enough for surgery and that this might affect her chances of survival. They were great and reassured me that while not the optimum scenario, they had helped other premature heart babies and that she still had a chance of a good outcome.  

On the 5th December I went into spontaneous labour and just a few hours later, in a room packed with people, Harriet Arwen was born. She was 5lb, which was a good weight and came out screaming at the top of her lungs. That made us all breathe a sigh of relief!

Harriet was transferred to the neonatal intensive-care unit (NICU) and we didn’t see her for quite a few hours.  When we did see her she was in an incubator but was breathing on her own and looked really well.  She had been started on a prostin IV to keep her ductus arteriosus open to allow her heart to keep working as it did in the womb. She would need this IV until she could have her first surgery.  This proved to be the biggest challenge that we all faced over the coming weeks.

Over the next few days the doctors were really happy with her. They let her start feeding by NG tube and I was expressing seven times a day.  It was a real challenge to find the time amongst ward rounds, cares, visitors and trying to eat and get a bit of sleep. We were fortunate to have a bed at the Cots for Tots house just across the road from the hospital but it was still incredibly tiring and emotionally draining.

After a week they needed to replace Harriet’s IV as it was going in through her umbilical cord but after a week that deteriorated and they needed to put in a long line which should had lasted a week or so.  We had many issues with these, including one that caused Harriet so much pain she couldn’t move her leg without screaming – that quickly came out.

Other than this, Harriet was doing well and was putting on some weight and after two weeks was big enough to move to the cardiac ward at the Children’s hospital. It was a big move for us from the white sterile NICU to the colorful and noisy ward. It became our home for the next 7 weeks and weirdly we still have fond memories of our time there even though it was under difficult circumstances.

Harriet’s prostin IV continued to cause issues. Line after line failed and we started running out of options.  We were called at 4am on Boxing Day morning to go to hospital urgently to sign consent for Harriet to go to surgery. They had lost all her lines, had shaved her head to fine a vein with no luck and they had called an team in to operate immediately to put in a anesthetic line that should provide a more stable option. Even the nurses on the ward said they had never known this happen.  Sending your baby to theatre at 5am in the morning was nothing sort of traumatic but she sailed though and was fine the next day.

A few days later we faced another hurdle. Harriet was experiencing terrible stomach pain and bloody stools. The doctors felt she might have a bowel infection called Necrotising Enterocolitis (NEC) which sometimes develops in premature babies. It can severely and permanently damage the bowel and can be fatal if left untreated. The best way to treat it is to give antibiotics and stop all milk for 10 to 14 days. She would be fed by IV solution only. It also meant that her forthcoming surgery would be delayed until she was better.

The IV problems continued and one day Harriet started having short apneas (periods of not breathing). Then just after lunch she turned a horrible grey colour and her breathing stopped but didn’t restart. The nursing team intervened and the resus team was called. Thankfully they were able to get her breathing again but we spent some time on PICU while they worked out what had happed. It turned out the IV was partially blocked and she was receiving a variable dose of the Prostin which is known to cause babies to stop breathing if they have too much.  The line had to go - again!

So back to surgery, thankfully in the day time, and a semi permanent Hickman line was inserted.   This was a much more secure option and we were able to have a few weeks with no further issues. On the 13th January, with all infection cleared and Harriet having gained enough weight, she was able to have her first open heart surgery – The BT Shunt.

Despite all the previous drama she did well and was back on the ward within a couple of days.  We were so relieved that her life no longer relied on good IV access.  We were told we might go home a few days later and the reality of taking our beautiful girl was finally sinking in.

Unfortunately she starting having stomach problems again and it looked like the NEC had resurfaced.  Milk was stopped and IV food was back. We felt like we’d never get to leave. Thankfully, a week later they reviewed the situation and decided she was well enough to restart feeding.  We were so relieved. By this point she was so small and thin.  Still only weighing about 7lb, yet she was 2 and a half months old.  She was proving to be a feisty one (that is, she cried a lot!) so they were happy for us to prepare to take her home.  

She was being fed by NG tube so we learned how to do this and started to introduce a bottle. After 9 weeks without sucking she struggled but we resolved to persevere.

We moved initially to Cardiff to meet our local cardiac team and within a few days they allowed us home. It was very scary taking her home for the first time with all the medication and NG paraphilia but I was just so grateful to be sleeping in my own bed with my baby girl for the first time in 10 weeks.

The next few weeks and month were challenging.  With a lot of hard work and persistence we were able to take out Harriet’s NG tube when she was about 4 months old. She did amazingly and her weight gain was fantastic.  As soon as we were able to start solids she never looked back. She loved her food and still does to this day.

Harriet had her second open heart surgery when she was 8 months old.  This was more of a struggle and she had a massive bleed when they attempted it and the surgeons nearly lost her. Thankfully a week later it was successfully completed with no drama.  Until this point her development was slow. She could say a few sounds and sit up but couldn’t roll over and was definitely no where near being able to stand.

After the surgery she was like a different child. She rolled, stood and walked within about three months and quickly caught up with others her age. She is now just 2 years old and full of life. For being such a tiny baby she is now big for her age and towers above most of her friends.  She does struggle with energy and gets tired quickly but she is learning to pace herself so that she can still enjoy being busy and active.

The last two years have been incredibly challenging but also very rewarding. Harriet is an absolute joy and just spending time with her makes all the difficult times worth it. We know we will have more difficult times ahead but, for now, we are just enjoying watching her grow and develop and making the most of her life.

[heartlog]

After my daughter’s third heart operation I broke down in tears because it was the first time I had ever seen her lips, fingers and cheeks pink – they were always blue before.

My name is Shane and my daughter Olivia is 11 years old with only half a working heart. 

After 10 years of trying for a baby and on the second attempt of IVF (In vitro fertilisation) I finally heard the words I'd been longing for: "Congratulations! You’re going to be a dad!"

Then on 27th February 2004 my beautiful daughter Olivia was born after 27 hours of labour. I just couldn't take my eyes off her and wouldn't leave her cot side. Eventually I did leave Olivia so I could go home and hang all the banners in readiness for her homecoming.

I wasn't home long when the phone rang and it was the hospital asking me to return to the hospital immediately as Olivia wasn't well so I jumped in my car and raced back, all the time things running through my head. When I got to the hospital Olivia was in an incubator and fighting for breath so much her back was arching from her mattress. It was a site that broke my heart. At first doctors said she had a chest infection, but then came the devastating news that something was wrong with her heart.

Olivia was diagnosed with a rare heart condition called Hypoplastic Left Heart Syndrome, also known as half a working heart. We were given two options: to take our baby home so that she could die peacefully in her sleep, or let her have an operation which had a 60 percent chance of survival. My whole world just fell apart. I decided that she deserved the chance of life and I said: “Please get her to where she needs to be.”

I was advised to have her christened immediately as they didn't know if she would make it. At first I was hesitant as I felt I was giving up on her, but then I decided to go ahead with it as I felt she needed all the help she could get.

Olivia was rushed to Birmingham Children's Hospital and on arrival I was given all sorts of information that I just could not take in. I wanted it to be over and for Olivia to be ok. A cardiac liaison nurse took me aside and said: "Don't worry. You'll soon be walking Olivia around the supermarket on a trolley and she'll be a spoilt little princess."

Olivia had an open heart operation at five days old. She was in theatre for 12 hours and had to be bypassed three times, she eventually came round on intensive care. Her little eyes were blinking and opening and I remember singing “My girl” to her. I finally got to take Olivia home six weeks after but she shortly returned back to hospital following some complications. Olivia had a second heart operation at six months old and did tremendously well. She looked like a different child as she wasn’t as blue and had loads of smiles and giggles.

From then on Olivia thrived and didn’t have her Fontan Procedure until she was 10 years old, on 14th September 2014. This operation was again carried out at Birmingham Children’s Hospital. I remember seeing Olivia in intensive care after she left theatre and I just broke down in tears because it was the first time I had ever seen her lips, fingers and cheeks pink – they were always quite blue. And even with all the machines and wires underneath her oxygen mask, she managed a grin and said: "I love you daddy.”

Olivia's my world and is such a brave young lady. She is now looking forward to a beautiful adventurous future and ready to take on any challenges life gives her along the way, with her dad always by her side. Olivia is my inspiration and an inspiration to all the heart warriors out there as she proves that you can live a full and happy life.

My advice to any parent who has a child with a congenital heart defect is to never give up hope. It's a long and rocky road but you'll have a beautiful heart warrior who will give you love and happiness. I would be lost without my girl. She's my heart, body and soul and Olivia and I are really looking forward to the future.

[heartlog]

My baby was 5 days old when I learnt he had half a working heart

My name is Amy and my son Harley is 10 years old with half a working heart.

When I was pregnant my antenatal scans showed that everything was fine. The doctors did not notice anything unusual about my baby and they said he was healthy.

I went into pre labour at 31 weeks and had a normal delivery lasting six hours. Harley was delivered at 6:05am on Saturday 7th January 2006, weighing 3 pounds 1oz. As Harley was nine weeks premature and so tiny he was shortly taken to the neonatal ward in the Royal Gwent Hospital. Two hours later I went to visit my baby and the nurses and doctors said he was doing very well but just needed to gain some weight, so overall I was very happy.

Unfortunately, five days later my world came crashing down when the doctor told me something was wrong with my child. I waited for the cardiologist to scan Harley and was then sent to a room where the cardiologist confirmed that my beautiful baby Harley had half a working heart, or hypoplastic left heart syndrome to be exact.  The cardiologist said to me I had two options: to either take Harley home and let him pass away peacefully with all his family around, or alternatively to give Harley a chance in life by putting him through three open heart operations, plus other procedures.

We decided to give our little son a chance.

Before Harley could undergo surgery at Birmingham Children’s Hospital he had to first put on some weight. He was transferred to the University Hospital of Wales for seven weeks, before going to Birmingham where Harley had his first open heart operation. I was so scared and didn't really know what to expect. The next day Harley went down to theatre and for six hours I didn't hear anything.

After six hours I was able to see my tiny little baby, he was covered in wires and had a sticker on his chest saying ‘Chest Open’. It was so scary to see, especially because he was so tiny. I prayed every day and night hoping he would pull through. He was in intensive care for the first five days, then taken up to high dependency for a week, then he went to a ward for another week. I finally got to take my baby Harley home when he was 10 weeks old, weighing 4 ½ pounds.  I was so happy to be bringing him home!

Ten weeks after Harley came home I took him back to hospital after finding little white spots on his scar. The doctor said it was fine so I didn't think much more of it. However, shortly afterwards Harley was rushed to Birmingham Children’s Hospital because his heart wasn't working like it should. When we arrived, they looked at the scar and said Harley had a massive infection, so they took him down to theatre for a cardio catheter.

When Harley came out he started having fits for two days, so they scanned his brain and to our horror he had a bleed on the brain, which affected the right side of his body. We were devastated, but a week later he was taken down for his second heart surgery and while he was in theatre the surgeon cleaned all the infection in his sternum and said he was very lucky. As the infection had spread, the operation took a little longer, but after seven and a half hours we finally got to see our baby boy. He was in intensive care for about 16 hours before being transferred to a high dependency ward.

After his operation and surviving a severe infection, our son Harley started getting stronger every day. Shortly afterwards we took Harley home but he needed physiotherapy, something he still needs to this day, for his arm and leg.

Harley was doing great for two and a half years and everything seemed fine with his heart. He was having cardio every day and we even took him abroad for his first family holiday, which he loved.

In June 2010 we took Harley back to Birmingham Children’s Hospital for his last heart operation. Me and Harley’s dad Darren thought this was the hardest operation for Harley as he understood a lot more and was very scared to go down to theatre. Then, five hours later we got to see our brave boy. Harley was in intensive care for about eight hours before being taken up to the high dependency ward. One week later Harley was walking and two weeks later he came home with us.

Today, Harley is doing really well and turned 10 on Thursday 7th January. Harley has yearly heart appointments, with the last one being on Wednesday 18th January 2016 and everything is going really well.

Thank you very much for reading Harley’s story, from Amy.