Being a first time father, while exciting, can be stressful on its own. Add to it the prospect of your child being born with multiple heart defects, and the excitement over your first child turns to fear. This week, Amit Shah shares his story, learning his son’s diagnosis and how it has changed the meaning of Father’s Day.
To help people understand what Father’s Day means to me as a heart dad I have to give a little history of our journey.
We were so happy when we found out we were pregnant. We were excited about this amazing new step in our lives. We were thinking about how happy our family and friends would be, what silly Halloween costumes we would wear to announce baby Sai, the fun we would have looking for nursery items & planning a baby shower. Alas that fairytale was not meant to be our journey.
At my wife’s 12-week ultrasound/OB appointment we had been told that there could be a potential for something to be wrong with our baby’s heart, but there was no need to worry, we just needed to get a precautionary echo. A few weeks later at our 1st fetal echo we were told Sai definitely had an issue with the right side of his heart specifically the tricuspid valve. The pit of my stomach dropped out from under me. I started thinking this was not the way it was supposed to be, we are supposed to be celebrating. This cannot be right, the doctor made a mistake, everything will be OK. At that time little did I realize how our fetal cardiology appointments would get progressively worse, turns out things were not going to be OK.
At what I think was the 4th fetal echo, the tech and the cardiologist spent what felt like hours taking scan after scan as I held my wife’s hand. Something felt off. When the cardiologist said we needed to find a conference room, I knew the news was not going to be good, but I was not prepared for what we were going to hear. Our heart journey with Sai started prenatally with a diagnosis of tricuspid stenosis, progressed to a hypoplastic right heart, and then added an enlarged left atrium & ventricle with mitral valve complications, arrhythmia, and slight fluid buildup around his heart. My head was spinning, and I felt sick as we got the news At that point I had minimal idea what all of it meant. We were prepared for HRHS and knew what we needed to do, but this was too much. I was just overwhelmed with sadness, anger, and wanted answers. It all felt unfair. A week later, on December 14th 2016 (the date is etched in
my mind), we had a more detailed confirmation fetal echo appointment with the hospital’s super tech to make sure nothing had been misdiagnosed. Unfortunately, no mistakes were made in Sai’s diagnosis. Due to all the complications discovered prenatally Sai had a poor prognosis (I hate that term), there was a very real likelihood that he may not make it. If he did get to term we would have a very complicated situation since both sides of his heart had issues, we needed to prepare for him to pass or for a very a long road filled with surgeries and no guarantees. We left the hospital that day and cried the hour back home. We decided to get a second opinion 2 weeks later from another leading hospital with an excellent pediatric heart program, and they confirmed the diagnosis but with a grimmer prognosis. Devastation is what I felt, when I was looking for hope.
We had spent the better part of my wife’s pregnancy emotionally drained and exhausted. I hated the fetal cardiology appointments and MFM appointments, I was pretty sure we would never get good news. I tried to attend as many Doctor’s appointments as I could and started the great learning process of everything that was wrong with Sai’s heart. I could get information on individual pieces but nothing on all of them together. I normally think of myself as a strong person, but I was lost in my own head, I did not have any answers, I could not help Sai, and I did not know what to do to help my wife. I can never imagine what she was going through, but she is a much stronger soul than I am. We did our best to support one another through those months, but they were really dark for me. At times my wife and I were mechanical, at times impersonal, and times overburdened with anxiety. We were going to do everything
in our power to save Sai, but we knew the odds were stacked heavily against us. From December 15th, 2016 until he was born, after breakfast, lunch, and dinner I would text or call to see if Sai had moved. This was a difficult but necessary routine. Every time my wife said yes, we were closer to him getting to term, and I could rest easy for 4-6 hours.
Outside of my wife and some support groups, I did not know who to talk to about Sai’s situation especially
as it progressed. How do you tell someone that your son potentially may not make it? When people would ask how the pregnancy was going I usually said everything was great with a smile. Privately with family and a few close friends I would breakdown at the thought of losing him. In my mind I was not a strong father or husband, I was supposed to fix things and I could fix nothing.
Turns out you can only keep saying everything is “OK” or “great” for so long. As we reached the 3rd trimester many friends and family started asking about the baby shower so that they could make plans. The 1st five times people asked I said we were working on it, and after the next 5 times people asked we concluded that we need to send a communication explaining the situation. This was one of the hardest e-mails I have written in my life. There was not going to be a baby shower, and we need all the thoughts, prayers and good energy people could send our way. I have read this e-mail many times, and still read it from time to time. The goal has always been that I not to tear up, so far I have failed miserably. As it turned out I needed to write that e-mail, I needed to let people know what was going on and share. The e-mail updates helped me cope and express myself. We would send an e-mail update out about every 2 weeks and keep people informed on big milestones.
As we approached Sai’s due date, we did get some positive news. While things were still very serious, it seemed that Sai’s heart was repairing itself, and there had been no arrhythmia for 4 weeks, all amazing
signs that Sai was fighting to stay alive. During this time we became aware of a new potential defect, Coarctation of the Aorta (CoA). The potential CoA and the left side of his heart (including the mitral valve) turned into the most immediate concerns for the doctors.
The day he was born was one of the most amazing and scariest days in my life. We did not get to hold him. I got 3 pictures before a team whisked him away to the NICU. We were expecting surgery, and for 5 days we waited for next steps. We held him, hugged him, and gave him as much love as we could, navigating wires, tubes and many annoying alarms. Not being sure what would happen, we spent hour upon hour in the NICU, so much so, that the nurses said we need to take a break; they would call if there is an issue. Five days and a lot of grey hairs later, we were told that Sai would actually not need surgery immediately. Turns out the Aorta was actually functioning fine (branching in the scans had thrown
the doctor’s off) and his mitral valve was functional enough that we could wait and see. While he had pulmonary hypertension and moderate/severe mitral valve regurgitation, we would be able to treat both with medicine. He was (and still is) a high risk candidate for surgery, and they would not do surgery unless it was absolutely necessary. After 11 days in the NICU we could go home with a lot of follow up doctor’s visits. It was amazing to bring him home and show him his new room.
So this brings us to Father’s Day. We never really celebrated Father’s day growing up (for a number of different reasons). I was not very close to my dad or grandfathers, and I vowed to myself that I was going to change that if I had children. I wanted to show Sai he is surrounded by love. This became even more of my mission as we have progressed through this journey.
Father’s Day last year was an amazingly special day where my wife and I got to celebrate with our miracle. It was a day filled with a lot of reflection for me, a day filled with tremendous joy and sadness. Sai was about 10 weeks old at that point, and all I could think about was that I was happy he was alive, not in the hospital, did not need surgery immediately, and was actually eating. I remember thinking how sad I would be if he wasn’t here. There was something amazing about holding him in my arms as he slept and as I thought through the past year.
This year’s Father’s Day it is going to be different. I am not going to spend time thinking about how Sai might not have been here but spend time celebrating him and what he has overcome. Being a heart dad has taught me a lot. This year I am not going to reflect on any sadness. I am going to concentrate on how we can make a positive difference. I am going to reflect on how Sai has changed our lives for the better and made us better people. I believe that everything happens for a reason and that Sai is right where he is supposed to be (with us). Sai has shown us how to be strong, persevere, and never give up. This year, even though he will fight with all of his might (he is quite independent), I want to hold him, hug him, and have him sleep on my shoulder. I want to show him how much we love him and that we will do anything and everything to make sure he is OK.
My wife and I are forever changed as people. We are humbled at the strength of heart kids and parents. Through all this we have learned to not take life for granted, appreciate everything around us, and that miracles do happen. We also realized that we are not alone and that there is so much help and support available. I am not sure we would have gotten through this without the help from our family, friends, and support groups. I never understood what people meant when they said that heart warriors are different, don’t underestimate them or give up on them, but now I do.
When we met with the surgeon prenatally he stated one thing that has really resonated with me in recent months. He stated, “If he[Sai] is going to keep fighting, we need to fight for him”. My wife and I have tried to expand on this and broaden it, so that we fight for all heart warriors. Through this process we have met so many amazing kids and parents that have gone through or are going through so much more than we did. My hope is that sharing our story helps another heart dad (or mom) to know that they are not alone, that there is support and help. You may feel lost and alone, but there is a huge heart family out here that understands what you are going through.
Today Sai is doing incredibly well, even the doctors are amazed. As we continue to educate ourselves and ask our doctors more specific questions, we have learned that Sai’s heart anatomy is pretty unique but functioning much better than expected. It is scary to me that medical science does not have answers on why his heart defects occurred, why he is doing so well, or how he will do in the future. I fear what the future may bring; I have so many thoughts that go through my head. I don’t know if I am ready to hear the words “it is time,” but I know that we will do everything in our power to fight for Sai and that we are surrounded by people who are also fighting with us.
Happy Father’s Day to all the heart dads out there, remember we too have a voice.
Amit Shah is a husband and a father of a headstrong son, Sai, who has multiple heart defects. He is pretty convinced that Sai is trying to take over the world. Amit is trying to navigate life as a new parent and a child with CHDs. He hopes through spreading awareness and knowledge of CHD that doctors and researchers can eventually find a cure.