His story: Part One

Although fathers are often as completely involved and invested in their children’s lives as the mothers are, their stories are often unheard, especially when it comes to high risk pregnancies, in utero diagnosis and subsequent birth and infant loss. I asked A to offer his perspective, a father’s perspective, on our journey with the hope that his thoughts may help men out there dealing with something similar. This is his story.

 “There are two ways to live: you can live as if nothing is a miracle; you can live as if everything is a miracle” (Albert Einstein)

I have always been somewhat of a nerd and the above quote has always resonated with me since childhood. As a collective family, we have been very lucky in that I have had a steady sream of healthy nephews and nieces since I was 6 years old. The beauty about children is that they are honest, unconditional with their feelings for you and are reliant on your care.

There have been many things of which I have been uncertain of in life, however, the one thing I always knew I wanted in life was to be a dad. Since I had grown up around so many children and been involved in their care, I was a rather proud uncle, filled with stories of their antics.

One of the first few things S and I bonded over when we started dating were the numerous stories about my nephews and nieces. It was pleasing to see that S also shared the same enthusiasm about children and one day hoped to have her own too.

After 7 years together, in the Spring  of 2014 we received the amazing news that S was pregnant. I was happy, relaxed, excited and still nervous; all at the same time. To that point I had always felt that it was miraculous how a baby is created in 9 short months when most humans can’t even build a house in that period. I found it amazing that a human body can help create an entire new skeleton and nervous system along with the unique and invaluable organs that sustain life. This wonder and amazement also ensured I was never arrogant or took the process for granted. I knew that all it took was one single process in a series of millions to go wrong for the outcome to be somewhat different. Despite this, I was always hopeful and excited at the thought of what was to come.

Nervously, we went to the first scan and we were amazed to see a floating baby embryo. The baby’s head was distinctive as were the little arms and feet. His heart was there beating away whilst his delicate spine kept his body in place. I was incredibly proud that I was going to be a dad.

A couple of months later, we had the second scan. For the first 20 minutes of the scan we were over the moon when we got to see our son waving his arms and legs and wriggling his body.

“There’s a problem” are the words not many, I imagine, want to hear in an ultrasound. The nurse mentioned those words and instantly my heart sank. Without even knowing what the issue was, it felt as if I was hit with a sledgehammer. I held S’s hand and told her it would be ok and we would deal with whatever comes our way.

We were taken in to a separate room where we were told that it seemed like our son had an underdeveloped heart, and it seemed to point towards a very severe and rare condition called Hypoplastic Left Heart Syndrome.

For a couple of days, before the diagnosis was confirmed, we looked into the condition and read about its severity, complexity and some tough stories on babies who had died or struggled living with the condition. We naturally were upset, there were a few tears and a lot of silence for a few hours.

Once we had a confirmed diagnosis of HLHS a few days later though, we both had a breakthrough moment for our little family. We concluded that the news changed nothing. The baby is still our very precious loved and wanted son and we were his parents. We would love our child no matter what and the strength of our love would keep us all strong. It was no one’s fault and it can happen to anyone. The outcomes meant anything could happen, and so staying positive and strong was important, while also appreciating the severity of the diagnosis at hand.

From that point on and throughout the pregnancy, S and I made a conscious and concerted effort to bond further with our son. We decided to name him and start treating him like the living, breathing baby he was. From a medical viewpoint, we didn’t know how long our son would live. As such, we decided that we would cherish and enjoy every single day we had with him. And we did just that.

We talked to him every day, gave him words of encouragement, I played the guitar for him and S learnt how to knit for him. I advised S to go on maternity leave considerably early as time spent with our son would be more memorable and valued than wondering in the future whether we could have spent more time with him.

I was lucky that I was able to communicate my feelings and the circumstance with S, our family, our close friends and even my colleagues and boss. I found that the more and more I talk about it in the right environment, I felt more confident about the future, whatever it may hold.

It was when I was on my own, I would find that sometimes my emotions would get the better of me and I would have tears rolling down my face.

As a dad to be, I felt helpless in that I couldn’t help my son. I felt helpless that I may not be able to give my son everything I had. It was here I realised that as arrogant as we are as people, we are helpless to many things. It is this vulnerability that should help us appreciate everything in life, from the kind gestures of those around us, to every biological or ecological miracle that we continue to benefit from. I realised that there is no one person on the planet that has everything in life. Life is not about what cards you have been dealt with but ultimately how you play your hand. Until now, I judged far too many people in life not appreciating what their personal challenges could be. The entire experience taught me that everyone has different challenges in life, no one is immune from it, not even me.

The universe is circa 13 billion old, it has and will continue to function without me or my son. I realised that in the context of this 13 billion years, living 1 day or 100 years is negligible. What is more important is that we make our time on this planet count as good people. As such, I have a responsibility as a father to be to be a good person and make sure my sons life counts and improves this planet. Consequently, I realised that crying or being upset is not going to help my son, wife or me. It was pointless and anti-productive to feel sorry for myself or even my son. The only way was forward.