Itās been a while. This is long.
Under any other circumstances I probably would be updating lovely things. But something Bad has happened and itās all I can think about so I feel the need to do a bit of a brain dump.
I am currently 24 weeks pregnant after over a year of trying. I am a nervous pregnant person due to my previous miscarriage, and every bleed or cramp I near enough cried.
At first it was suspected ectopic pregnancy so I had to spend the night in hospital. Then they couldnāt see heartbeat so I had to have a repeat scan. Then I bled, so was back for another scan. Then I got hyperemesis and couldnāt keep down water so I had to stay in hospital on a drip over night. Then at my 16 week midwife appointment she couldnāt hear the heartbeat so it was back to the hospital for another scan to check he was ok.
Then I got to 20weeks and I finally felt relief - only 4 weeks away from viability (which seems like a huge milestone) and an anomaly scan which said everything was fine.
āHes got his chin tucked inā aww bless him āand his hands over his chestā how cute! āand thereās quite a bit of you to get throughā hang on cheeky āso I havenāt quite been able to see the chambers of the heart. Nothing to worry about, just need a repeat in 2 weeksā
2 weeks later and on the day of the scan Iām more worried about getting my work finished in time to leave early for the appointment, than about the appointment. I get it done and go to the antenatal clinic with my mum (adam didnāt get out of work and I said to not worry about it!).
Baby is in a funny position and sonographer is really struggling. I trot off and eat some chips for half an hour and come back. They scan me again and are really concentrating on the screen, in utter silence, taking picture after picture. At this point Iām still a bit ignorant, and quite happy just watching baby on screen with my mum.
āIām sorrry, sweetie, itās not good news todayā
Que tears, panic, confusion, and a weekend of utter misery.
A week and a half - and several consultant and cardiology appointments - later and here are the facts. Babyās heart isnāt developing quite as it should. He has a blockage in his aorta (called Coarctation of the aorta). This alone is one surgery at 4 days old and, while scary for such a small baby to go into and recover from, is a cure.
The problem is that the blockage means that blood isnāt flowing to the left side of the heart as easily, and the left side of his heart is significantly smaller than the right. This is likely to lead to Hypoplastic Left Heart Syndrome, a fatal congenital heart defect with no cure. My 3 options in this instance would be:
ā«ļø 3 consecutive surgeries that we could try, which have a 60% survival rate, and if he survived life expectancy for this condition is 20 years old. He would likely have development issues, other organs affected, and other issues to do with immune system which would mean a lot of hospital trips.
ā«ļø Terminate my pregnancy at any point before term. (I would still have to go into Labour with this option)
ā«ļø Palliative care when he was born, he would likely pass within 2 weeks of being born
Safe to say, I donāt know what to choose. Iām currently waiting for amnio results to rule out chromosome issues (already ruled out downs, pataus and Edwards). I think a chromosome issue would mean I wouldnāt be able to get the surgery so only termination or palliative care available.
Iāve done some research and there are some studies that suggest that oxygen therapy can encourage blood flow to the left side of babyās heart so Iām hooked up to oxygen for 3 hours minimum a day to see if it helps it not progress. Itās the only thing I can do, and it would feel like madness to not do anything.
I also have to give birth in a different city to home , which isnāt that big on my list of things to worry about, but still scary.
Iām signed off work, I get results back for amnio in 2 weeks ish, and Iām in oxygen chamber twice a day, or hooked up to an oxygen concentrator at home. I have a scan at 28 weeks with a consultant, and a week at 29 weeks with a specialist. I hope that blood is still flowing to the left side come those appointments, but even if it is every thing could change in the 11 weeks between that and delivery.
All Iāve learnt in this last week is that sometimes life is shit, and youāre thrown shit that you should not have to deal with.
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