Our Miracle Baby: Surabhi's Story of Surviving Congenital Diaphragmatic Hernia
Today on 10th June 2014 , my baby Surabhi turns a year old. It has been a tremendous journey for us and I'm compelled to share her story with the world. Compelled because once you read her story, you will be able to appreciate the fact that there is hope even in the most impossible situations. We share a lot of stuff online, some for fun, some for knowledge..... I'm sharing this for awareness.. In the hope that after reading my write up, people who are in similar situations will know what to expect and maybe be able to save a tiny baby's life. This story may be long, but I wanted to include so many of the details that are important for other people experiencing this type of defect to help answer questions and give them hope.
It all started a couple of years back when my husband Akshay and I were contemplating having a baby. We had been married for 4 years and even though we weren't completely ready we knew the time was right. Then around October 2012 I finally got pregnant. Like all new parents to be we were really exited. Somehow from the time we conceived our child we always knew she was going to be a girl. The first few months of my pregnancy were completely normal. The morning sickness (mine was in the evening), the hunger pangs, the cravings etc. It was a beautiful time knowing something so magical was growing inside me. We had already started talking about names and used to discuss frequently how she would be, whose nose she would have, whose smile and whose eyes :) Around the end of my 4th month of pregnancy, my husband got a job in another country and had to leave to make a living for us. I stayed back to continue working in my current job till such time as I could join him. I missed him, but I had a lot to look forward to and by then my baby had already started kicking me announcing her arrival.
On 21st Feb 2013, I woke up bright and happy as I was scheduled to undergo the anomaly scan. I did not give a second thought to it. In fact, I did not even realize that an anomaly scan was used to find anomalies in the fetus. All I thought about was that today for the first time I would be able to see my baby clearly in the scan - hands, legs, mouth, nose, eyes et all. I was consulting with a doctor in one of the reputed Maternity Hospitals. I was with my Mother and Mother-in-law both of whom had come to see their unborn grandchild for the very first time. During the scan, the sonologist did not talk much. He said he would examine everything and then I could have a look. I waited patiently for the moment that I would see her . The scan was taking longer than usual, but I wasn't able to make out much from his expression; maybe because I wasn't expecting bad news at all!
As an expectant parent, there's one sentence that no one wants to hear: 'There's something wrong with the baby.' When I heard those dreaded words during my Child's ultrasound, it totally and completely shattered my world. My baby was diagnosed with a condition called congenital diaphragmatic Hernia.
Congenital diaphragmatic Hernia or CDH is a major malformation of the diaphragm which allows the abdominal organs to move into the chest cavity. The diaphragm normally develops in the unborn baby by around the 7-10 week gestation period of the baby’s development and CDH occurs when the diaphragm fails to form correctly or fails to develop in the unborn baby, allowing the abdominal contents to herniate into the chest cavity, which in turn prevents the lungs from developing properly. Depending upon at what stage the abdominal contents herniated, how much, and the size of the hole in the Diaphragm will determine how much the unborn baby’s lungs and other internal organs, such as the heart, have been affected.
In my daughters case the prognosis was very poor as in the antenatal scan itself which is not very accurate, they were able to identify that the stomach and bowels had already herniated. Her heart was pushed into the right lung and the left lung had not formed at all. I was overwhelmed! I came in with absolutely no fear and now I was drowning in fear. I could not understand how she was alive and kicking me when her tiny organs were in such disarray. I was shocked beyond belief and was not able to register anything the doctor said. Finally, as if the voice was coming from a great distance I could hear the doctor telling me that there was nothing to be done now except abort the pregnancy. They said my child wouldn't survive and it would be cruel on my part to continue with the pregnancy for even if she survived, she would have a very poor quality of life.
Even in my sheer disbelief of the problems my daughter had, I could not come to terms with what the doctors were asking me to do. I was well past the legal and the safe period for abortion, yet they tried to convince me that that was the only option available to me. I had seen enough greys anatomy to realize that there may be some way to save my child. I begged them to give me other options as I wanted to do everything I can to save my child but they kept insisting that it was not worth the trauma that both my child and I would have to endure. They said I should have patience and try again for the next time I might have a 'Perfect Baby'. I was astounded that qualified medical professionals could talk like this. I was alone without my husband and was not going to take such a major decision in a hurry and without exploring every possible option available however obscure. I told them I needed time to think and walked out from there.
Getting Over the Initial shock
I told my husband about what happened and shocked as he was he took the next flight back home to figure this out with me. Immediately after, we went to another renowned sonologist. He confirmed the diagnosis but he also added that there is hope as the condition under the right circumstances was operable. What we needed was a competent team of doctors and the highest level NICU care. He referred us to the top 2 Doctors in Bangalore who might be able to save her. This was the ray of hope that my husband and I had been waiting for. We immediately set to work on contacting these doctors and researching on CDH. What we found was astounding. CDH affects one in 5000 births and 40% of the babies do not make it beyond the first 3 months of gestation. Another 30% do not make it beyond 6 months. Of the remaining 30% that do make it to term, only half of them survive. Based on these statistics, my baby was already a survivor...She had made it beyond six months of gestation.
We went to Narayana Health in the beginning of March 2013 and met Dr. Ashley D'Cruz (head of pediatric surgery) and his team. Their approach was so very different from what we experienced at the earlier hospital. They did not assure us that our baby would survive but they did say we had a right to give her that chance to survive (even if it is a 10% chance). They assured us of the highest level NICU care and told us they would do everything humanely possible to save her. After this there was no going back for us. We were scared yes.. but we were also filled with renewed hope.
The days passed by and very soon it was time for my delivery. It had to be a planned C-section as my baby would have to be put on a ventilator immediately to prevent any brain damage due to lack of oxygen. We were asked to pick a date. How do u pick a date for the birth of your child, the date which according to astrology would determine the fate of her entire life? Well... not being very religious we just picked the most convenient date :) 10th June 2013..
I remember the night before I had to give birth, sitting in the hospital room with my husband fully aware that this could very well be the last time I'm holding her, feeling her heart beat inside me..feeling the gentle nudges and kicks, realizing fully for the first time what lay ahead of us. We had to prepare ourselves for the worst and hope for the best. But how does anyone prepare for something like that. You are in limbo,unable to move, think or feel.
Finally the day of the delivery arrived... I was numb. I cannot explain in words what I felt when they wheeled me into the OT. The look in my husbands eyes said it all.. We were beyond scared, beyond terrified. Yet we had hope. Hope that our baby will be a fighter and survive. And then, I finally heard it, the first cry.. tiniest of tiniest cries. I could see the paeds doctors on the next table desperately trying to intubate her and keep her alive. I'm not a religious person but on that day lying in the OT with my child fighting for survival on the next table, pray I did. I had not seen her yet and I did not even know if she was a boy or a girl for quite sometime. It was only after they had almost finished with my surgery did I even remember to ask the doctor and It was a girl. The minute they said that I knew how exhilarated my husband would be. I named her Surabhi, the name we have decided on long long before her arrival.
Surabhi was intubated immediately after birth and was on nitric oxide and the ventilator. Her condition was a lot worse than we had initially suspected. Not only had her stomach and bowels herniated but also her spleen, kidneys, gall bladder had herniated. Her heart was also under tremendous pressure due to extremely high pulmonary hypertension. We could actually see her tiny heart beating at almost 200 beats per minute against her chest. She needed surgery, but first they had to somehow bring down the hypertension and her heart rate. We waited keeping our fingers crossed constantly looking at the monitor to see if there was any change..Our doctor, is from the old school of thought and believed that the mothers voice and encouragement will give her the encouragement that she needs to keep fighting. And so my husband and I sat by her side day and night calling out to her, whispering words of encouragement and singing to her. It was heart breaking seeing her tiny body covered in tubes, wires and tapes and IV lines. We had no idea what she looked like. We could only see a small patch of her forehead and chin and the only part of her we could touch was a small part in her upper arm. The rest of her tiny body was covered completely. It worked I suppose and thankfully, by day 3 her heart rate and hypertension had come down marginally. This was the window the doctors were looking for and decided to operate immediately. Have you ever had to sign one of those dreadful forms that gives you really poor prognosis and you have to sign it anyway because if you do not do the surgery the outcome is fatal. Well this is the second time in three days that we had to do it.
I vividly remember the day of her surgery, I had been doing so well and holding it together and I went down to see her before the surgery and my husband was with me. I saw her lying there covered in tubes and just realized I haven't even held her yet, I had not even seen her face, did not know the colour of her eyes and she was our baby! I just lost it. I couldn't stop crying and I felt like I was going to be sick. What if this was it?
Well!! She barely survived surgery as her heart rate went up dangerously high. The surgery should have ideally relieved the pressure on the heart but her hypertension and heart rate did not come down for a couple of days following the surgery. Those two days were the days when we had almost lost all hope. But then a new day dawned and she fought through. Her hypertension and heart rate came down and after almost 25 days on the ventilator she was ready to be extubated. It was a joyous day for us as that was the first time she would be breathing using her lungs and we saw her face for the very first time.
The joy was short lived. Shortly following the extubation, she went into respiratory distress as her lungs had collapsed and she had to be re-intubated. We spent the next couple of days trying to make her cry because crying helps draw in oxygen and will open up the lungs. It was one of the most distressing things we had to do to as parents and it was heartbreaking. But it worked and she was extubated again. This time for good. Once off the ventilator she continued to be in the NICU on oxygen support on a C-PAP machine as well as receiving hood oxygen for some more time. She was later moved into a private room on full oxygen which would be weaned of gradually. We were finally allowed to stay with her and we held her for the very first time a month after she was born.. Most mothers out there would know how it feels to hold your baby for the first time. I cannot describe what I felt holding her after waiting for a month.
We were in the hospital for a few months more during which time they gradually weaned her off the oxygen support as well as the feeding tube. I nursed her for the first time somewhere on day 60. It was beautiful and also a little clumsy, both mother and daughter did not know what we were doing as we had no practice. Finally the day arrived when we would be taking her home. We had become long term residents of the ward and Surabhi was already everybody’s pet. Throughout the hospitalization, the NH team acted as if Surabhi was their own baby, and we were happy to share with them, both the joy and the work! We are forever thankful for the care the doctors and nurses took of our baby.
Once home, she developed beautifully around her loved ones. She had problems, especially breathing trouble and feeding trouble. Her respiratory distress has slowly improved, but her feeding trouble remains. Having been ventilated for so long and being on the feeding tube for 4 months, she has an exceptionally heightened gag reflex and suffers from severe acid re-flux as well. Because of this she tends to vomit her food a lot and has a lot of difficulty gaining weight. But we manage that with supplements, and a high caloric diet. But apart from this she leads a completely normal life for a baby. Surabhi is now one year old and she has had no development delays in-spite of all her problems. She is on par with the social and cognitive growth chart and is an extremely engaging child. If you see her now , you might say she is small for her age but otherwise cannot tell that she has had any problems.
When I look back now I am so glad I did not listen to doctors who told us to abort the pregnancy. I am proud that my husband and I decided to give her the chance to live even though there was only a 10% chance of survival. I am extremely thankful for our support system - our parents and siblings who stood by us in every step of the way.. being there for us physically, emotionally and financially.
I am no writer but what I have written is straight from my heart. When I found out that my baby has CDH, I did not have anyone to talk to about it as most people, even many doctors do not know much about it. Even I did not know. But now I do, and I have experienced it and I want to be there for someone who is feeling lost and seeking guidance.
It is not an easy journey and the battle is not won even after you are discharged from the hospital. Everyday is a challenge and sometimes I feel like I’m being tested way beyond my limits. Life as I knew it, has ceased to exist. I haven’t slept in over a year. I know most new parents go through this, but I lay awake in fear that she might stop breathing any minute and the constant watchfulness has taken a toll on me.
But the real question is: is it all worth it? For me, it is more than just being worth it. Every success I have with my daughter gives me such a high! Her eyes, her smile and her little words bring such joy to me that I never knew I could feel. At the end of a long hard day, when I look at her sleeping and think of all the things she has accomplished - I feel content. I have grown as a person and have started living in the moment.
A while ago I came across a poem, it’s called “Thoughts on Becoming a Mother”. The following part really touched me and how my perspective has changed since our journey with Surabhi:
“I will be a better mother for all that I have endured. I am a better wife, a better aunt, a better daughter, neighbor, friend and sister because I have known pain.
I know disillusionment as I have been betrayed by my own body. I have been tried by fire and hell many never face, yet given time, I stood tall.
So now, when others hurt around me, I do not run from their pain in order to save myself discomfort. I see it, mourn it, and join them in theirs
And even though I cannot make it better, I can make it less lonely. I have learned the immense power of another hand holding tight to mine, of other eyes that moisten as they learn to accept the harsh truth and when life is beyond hard; I have learned a compassion that only comes with walking in those shoes.
I have learned to appreciate life.”
Thanks for reading and sharing our story! Never know who can draw hope and strength from it - As you see our baby who had absolutely no hope of survival, has not only survived, she is thriving.
To our parents - without whom we would have never had the courage to go through with this. They were and still are the pillars of strength that support us.
Dr. Ramamurthy (Sonologist) - who confirmed our diagnosis and was the first person to direct us in the right direction. He stayed with us through out our journey giving us hope and following Surabhi's progress.
Dr. Nandini Devi and, who monitored me throughout the pregnancy and ensured that I had a safe and smooth delivery.
Dr. Anuradha, who worked seamlessly with the doctors at NH and delivered my baby.
Dr. Ashley D'Cruz, Dr. Sanjay Rao and the entire team of Doctors both in the NICU and the ward. They saved our baby's life and have given us a gift that we will cherish forever. They looked after our baby as if she were their own and even after a year are just as supportive and approachable as when we were at the hospital. We are truly grateful that we chose to go to NH and have this wonderful team as Surabhi's doctors.
The NICU and the 5th Floor ward nurses. When you leave your child in the NICU, the nurses are playing the role of its mama. And how well they essayed that role. The care and affection that was given to Surabhi in the NICU was beyond compare. The 5th Floor ward became our home for so long and the nurses were our roomies :) they made everything so much easier and taught us so much about taking care of Surabhi. Hats off to them.
The security staff and the lift operators at the hospital. No matter what time we came in to the hospital to visit our daughter (sometimes even in the middle of the night) - they always had a kind word to say to us, a word of encourage and a smile. They might not know it but it meant the world to us.
Lastly, to all the people - family and friends who stood by us and hoped along with us for Surabhi's recovery and good health.
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