my baby was born with a congenital heart defect
It’s taken six years to be able to even think about writing this post. My baby boy was born with a rare congenital heart defect. Even now, with an energetic and exuberant six year old running around, that sentence, in black and white, is difficult to read. But I think it’s important to tell this story. It’s important because one in ten babies will be born with a congenital heart defect (CHD). It’s important because I feel that if our story gives even an ounce of comfort to other parents who feel the sense of bewilderment and helplessness that we felt, then it will be worth telling it in the public way in which I am telling it. It’s important because I know there are other CHD mums out there who have experienced similar feelings to me. I want them to know they are not alone in having those difficult feelings. That they are completely normal. That they will get through this. I think reading a story like this might have helped me.
This is Hugo’s story.
I had the perfect pregnancy. It was honestly the happiest time of my life. When I say that, I know that a lot of women look at me as if I’m nuts. But I felt well, and glowing and almost invincible. I woke up feeling excited every single day. It had taken six years of fertility struggles to finally conceive (that’s a whole other story) and I felt like the luckiest woman alive. I virtually skipped with glee through the whole eight and a half months. Mr H was ecstatic that he would finally experience fatherhood. We made plans. We bought all the totally unnecessary things that all first-time parents buy (wipe warmer anyone?) and we set up the nursery. We felt unbelievably lucky. It was blissful.
In mid June 2012 our lives changed forever. Of course, every mum and dad’s life changes forever when their first child is born but ours changed in a way that we were not expecting, and in a way that we were certainly not prepared for.
Hugo’s birth, just like my pregnancy, was relatively easy. I was induced and he appeared very quickly. Anticipating a long slow labour, Mr H had popped back home to walk the dog (with my agreement – what were we thinking?!!), and very nearly missed the birth. As did my OB GYN. He rushed in from doing a surgery next door in full scrubs (the doctor, not Mr H!). It was all quite dramatic but I just remember feeling so calm. I was finally going to meet my miracle son. I had been born in the same hospital 36 years earlier, so I felt that everything was as it should be. How wrong I was.
I don’t remember much of the immediate aftermath but apparently Hugo was a bit blue. I remember holding him against me and marvelling at how tiny he was. I don’t recall much of the first night either. Hormones, exhaustion and brain fog. My Mum arrived at some point. She’d rushed over from the UK as Hugo was two weeks early. Seeing her look at Hugo for the first time, in his little cot, was one of the happiest moments of my life. My Mum was made to be a grandma and this was her first precious grandchild. But Hugo couldn’t feed. He was puking green goop. The following morning we were told, after some tests, that he had an intestinal blockage and that, because we live on an island, the only option was to go to the US so he could have surgery to fix it. He would have to be transferred by air ambulance. I think his little life hung in the balance at this stage but we didn’t yet understand the full extent of his problems. I was terrified but somehow operated in zombie mode. Mr H coped in the only way he knew how, which was by arranging all the formalities. In the space of eight hours he managed to organize the air ambulance, and a passport for Hugo which included having to get him a police clearance certificate….for a human who was less than a day old. That night, Mr H and Hugo were on an air ambulance to Miami Children’s Hospital. My Mum and I were to follow the next day. Just before they left, the paediatrician told us to “remember that Hugo is your baby”. At the time, I had absolutely no idea what he was talking about. Obviously he was our baby. However, the real truth of these words became very meaningful later on.
I walked into my house that evening to find that it was full of balloons and cards and baskets of lovely gifts from our friends. It should have been such a happy homecoming but of course it wasn’t. I think I broke down at that point. My baby was in an air ambulance with his Daddy heading into an uncertain future and I was standing in my kitchen, leaking breastmilk, surrounded by joyful messages and feeling totally and utterly bewildered.
The next few weeks are somewhat of a blur. To repair his gut, Hugo had a five hour laparoscopic surgery by a genius Italian surgeon whom I will love forever. It was successful and we were told that, although he would need to be in the NICU for 8 weeks or so and tube-fed, he would eventually recover. He was a little fighter. And then one day, just as we were coming to terms with the realities of life in the NICU we got the really bad news. Hugo had a heart defect called Tetrology of Fallot and he would need open heart surgery. KABOOM. The news that no parent wants to hear. We struggled to comprehend what was happening. The doctors told us that ToF was “fixable” and that they could carry out a full repair on his heart at around the age of three months. I tried to zone out as they explained the risks.
In the NICU Hugo was connected to many scary looking tubes and wires and machines and for days we weren’t even allowed to touch him, let alone hold him. I became obsessed with analyzing the monitors that measured his blood oxygen and heart rate and the constant beeping became the soundtrack to our NICU life. I have to admit that I did not cope well. I felt totally disconnected. I didn’t know who this baby was. I looked at him in his cot and didn’t feel love. I just felt an extreme sense of anxiety and helplessness. He was ours but he was also alien to me. I felt he didn’t need me. Although this was clearly not his fault, I felt rejected. I was surplus to requirements. He had a team of nurses and doctors to keep him alive 24/7. In truth, I wanted to escape the pain and go to bed to sleep. To forget. It was a dark time and I felt incredibly guilty. Why didn’t I feel a natural bond with my baby? What was wrong with me? Was I dead inside? I didn’t tell anyone that I was having these feelings because I felt so terrible about them. I was offered counselling but, stupidly, I didn’t take it. I know now that was the wrong decision. I should have done. I also know now that all of these feelings are common after a trauma like this. We can click into a very deep primal survival mechanism in this situation. It’s a form of self preservation. This is what the paediatrician had been alluding to with his advice to “remember he is your baby”. But I only recognized the wisdom of these words months later. My mum (a very wise lady) also told me that I was going through a type of grief in this time. I was grieving for the loss of what should have been a magical time with my first baby as a new mum. She told me I should give myself a break. I was handling it all as best I could.
Only a few days into our stay on the NICU, one of the nurses gave me the best piece of advice that I think I have ever received. She told me to start pumping and storing breast milk because she said that, when Hugo finally began feeding, it would be the best start he could possibly have. She said that I should pump every three hours consistently, and she showed me how to label the little bottles and store them in the NICU freezer. Pumping breastmilk every three hours became my life. It gave me something to do beyond staring helplessly at Hugo in his cot, and a way to contribute. It was something that only I, as his mum, could do and that gave me a sense of purpose. It kept me going. I would go to the NICU pumping room at the allotted time and sit and pump. Sometimes there were other NICU mums there to and sometimes we chatted but most often we sat in companiable silence, too tired, or too sad, to talk. You could tell the newest members of the NICU club by the level of abject terror in their eyes. One thing I learnt in the NICU is that babies are incredibly resilient. We saw a stream of seriously ill babies come into the NICU while we were there. Many of them looked like they couldn’t possibly survive. But frequently they had the surgeries they needed and were on their way home days later, looking like normal babies. It was quite incredible.
Another invaluable piece of advice came from my friend who had also been through a medical emergency with her own child. She came to visit me in the very early days when I was dragging myself around like a zombie. When I asked her how she made it through each day she told me to force myself out of bed in the morning and take a shower. This would mark the start of my day. In the evening, I should take another shower and this would mark the end of my day. It would be a sign that I had made it through another day. I would be a day closer to Hugo being well enough to go home. So that is what I did. It’s simple, but effective. It got me through.
Once Hugo was able to feed by bottle we were discharged from NICU and went to live in an apartment near the hospital. Before being released, we were told that Hugo was at risk of going blue and shown how to attempt to resuscitate him if necessary. This didn’t make for the most relaxing few months as we waited for him to reach the weight necessary for him to have his heart surgery. It was a difficult and nerve-wracking time in which we desperately tried to get him to drink his milk and grow and hoped that his little heart would keep pumping. When we look back at photos of that time, we realise how grey his skin was. I’m not totally sure how we got through that period but we had family and dear friends visit and that helped a great deal. I started to become more bonded with Hugo during that time but I still remember it as a time of extreme anxiety, not a time of joy.
After what seemed like an extremely long time, we were told that Hugo was ready to be re-admitted to have his surgery. By this time, he looked very grey and sickly. We placed him in the hands of his surgeon, Dr Redmond Burke; an absolute rock star of a man. Another surgeon that I will love forever. Before the surgery, they sat us down and explained all the risks. They told us that they would be stopping Hugo’s heart, removing it, putting Hugo on by-pass, repairing the heart, returning it….And then starting it again. I mean, WHAT?? I’m not sure how I got through that time in the waiting room. To this day, I don’t even know how long we were there. Four hours? Five? Twelve? All I know is that Dr B came out and told us that he had fixed Hugo’s walnut sized heart. That’s all I needed to know. I didn’t need the details and I certainly didn’t want to look at the HD photos. Another thing I have learnt – surgeons are very keen to show you their handiwork, and put it on youtube. Understandable I suppose. This man saves tiny lives on a daily basis.
A while before the surgery, I discovered that the gold medallist Olympic snowboarder, Shaun White, has the same heart defect as Hugo. In my terrified mind, and strange as this might sound, this was a great comfort to me as we waited in that waiting room. Shaun White is the ultimate athlete. If he could thrive, so could Hugo. I clung onto that thought. Coincidentally (or was it?), we had spent some time with Shaun and his family in Cayman a few years before, and his Mum had told me some of his story and about the surgeries he’d had as a baby. He’d had a very difficult start too. It was one of those things that stuck in my head and, after Hugo was born, I remembered what she’d said and I googled Shaun White’s heart defect. Lo and behold it was Tetrology of Fallot. Life works in strange ways at times. More recently, Jimmy Kimmel’s baby boy, Billy, was also born with ToF, and you may have heard his moving monologue about his own family’s experience.
The days immediately after the surgery were ropey. We were in the pediatric cardiac unit and this time Hugo had his own room. Again he was covered in wires and monitors but this time he also had a gnarly six inch incision in his teeny tiny chest. The first time I walked in to see him I literally couldn’t cope and had to leave the room. But after the first few days that were touch and go, he recovered amazingly quickly. The doctors and, especially, the nurses were truly incredible superhumans. We owe them everything.
We flew back to Cayman a couple of weeks later. It was a very, very emotional and wonderful day. We had been away for three months, but it felt so much longer. We were home for the first time all together as a family and we could finally start to build a life together.
Hugo is six now. He’s an incredibly happy and energetic little boy. He radiates an infectious joy that is hard to describe. He’s in Grade One at school. He loves scootering and football and swimming. We feel lucky to have him every single day; even when he leaves his clothes trailed all over the house and uses the living room as a giant carpark for all his toy cars. He will need to have further surgery when he’s older but he’s doing really well. We have a great relationship now but I won’t pretend it’s been easy. I have continued to struggle with guilt. It took me a long time to get over the feeling of loss I had surrounding the three months after he was born. Movies tell me this should have been a blissful time of bonding and getting to know my baby. That is a time that I will never experience. Of course I realise that in reality this is often not the golden time of bliss and joy that I imagine in my mind, but I will never really know how things could have been. Hugo’s birthday always brings mixed feelings with it. I focus on celebrating with him and making him feel really special but, in the pit of my stomach, I think I will always feel that anxiety and think back to that day.
We know we are very lucky to have Hugo. Many babies with CHD don’t make it. We know families in our community here in Cayman who have lost precious children to CHD. It is heartbreaking and supremely unfair. We were also incredibly lucky to have the best medical care. Not all babies are given the chance that Hugo was given.
The process of writing this piece has been cathartic and therapeutic for me. It’s hard to publish something so personal, but this chapter in our lives will forever be a part of our story and so in my personal blog, it would be wrong not to include and acknowledge how this has shaped our family and fed into my passion for health and wellness.
If you have been through something similar and you would like to share your story please email me on firstname.lastname@example.org.