We Didn’t Know

Alexander Day 1

The more heart families we get to know, the more I think about a simple division that exists for parents in our situation; those who knew about their child’s condition before they were born, and those, like us, who did not. Alexander was born in May of 2009, and as time passes and I see new families step into the shoes we wore six years ago, I find myself giving a lot of consideration to those early days after Alex was born. I remember it being very difficult at times to sort out my feelings. The analogy of a balloon comes to mind. All the joy, excitement, and pride of becoming a father again lifting the balloon off the ground, but this time fighting against a giant weight called CHD that houses feelings of confusion, fear, and despair, and prevents the balloon from lifting as fast as it should. The passage of time also allows for some internalizing and self discovery. I don’t think I realized it at the time, but it turns out I was angry. I think my family and friends would tell you I’m a pretty calm guy. I actually don’t remember the last time I got really mad. I don’t like conflict, and typically try to solve problems through compromise and consensus building instead of arguing a point. I don’t like feeling angry. But it turns out, I was, and here’s the strange thing… I wasn’t angry at the world for putting us in this situation, I wasn’t even angry at God for implementing this plan without running it past me first. I was angry because most of the other parents we spoke with knew this was coming, and we didn’t.

For a long time, we just accepted that Alexander’s CHD was simply missed during the routine prenatal Ultrasound. After all, the heart of a baby is a tiny little thing, and surely the differences between a healthy heart and a CHD heart are small and subtle when seen through sound. After a while though, things began to suggest that Alex’s condition was more conspicuous than that. Right Atrial Isomerism is very complex from a physiological standpoint. It’s one of those CHD’s that bring with it multiple complications, and lots of fun acronyms (ASD, VSD, DORV, TAPVR, etc.). There are also several anomalies present not related to his heart. His liver and stomach are reversed, and he’s got no spleen, just to name a couple. Surely some sort of flag should have gone up in the Ultrasound right? Looking back, things started to hit home when Alexander was moved to the NICU at our local hospital for evaluation a few hours before being transferred to SickKids for the first time. The sonographer performing the echocardiogram was very honest. “I’m not qualified to offer any feedback. I don’t understand what I’m seeing”. If it was so obvious just after Alex was born that something was really wrong, why didn’t they see it before?

Well, it turns out some signs were present. During our first prenatal ultrasound the results stated that the pictures of the heart were “unclear”. They needed to schedule a follow up after he developed a bit more to get a better look. I’ve often wondered if the initial pictures were in fact, unclear, or if the radiologist simply assumed they couldn’t be right. We’ll never know. It was during the second ultrasound that it appears the mistake was made. “We got a clear picture, and everything looks fine…”

It wasn’t until after Alexander’s Glenn/Coles procedure that we eventually decided to ask the blunt question. After one of Alex’s cardiology clinic appointments, we simply asked his cardiologist. “Should someone have seen this coming? Should we have known about Alexander’s condition before he was born?” Our doctor paused, I think considering his response. He then deferred to the cardiology fellow shadowing him… “What do you think?” he asked the other doctor.

“In my opinion, the physiology of the top part of the heart could have been missed in a routine prenatal ultrasound. However, under no circumstances should the single ventricle physiology, or the configuration of the pulmonary veins have been missed on a follow up ultrasound focused specifically on the heart,” he said.

Our cardiologist agreed. He then asked us a question I’d never really considered.

“Now that you know, you need to ask yourself… what would have changed?” he asked.

It was such a simple question, and I should have had an answer. I know that Alex would have been born at Mount Sinai and immediately moved to SickKids, but in the end everything worked out okay with him being born in Newmarket too. So what would have changed? Why was I angry about something I really hadn’t properly considered?

“We would have been prepared,” was all I could come up with. Our doctor smiled, likely at the absurdity of my response. We wouldn’t have been prepared, nobody can be. Sure, we might have been all set up logistically. Grandparents would have been on call, time would have been booked off from work, maybe we would have had a pediatrician all set up… but prepared? I doubt it.

And what about all the countervailing “what ifs?” What if we’d been assigned a different cardiologist? What if we never met Alex’s amazing pediatrician, who we actually pretended to know just to get an initial appointment? What if the added stress to the end of Michelle’s pregnancy had resulted in something catastrophic? What if we’d been told Alexander was unlikely to survive?

I admit, I assess these from the position of a parent whose child has done extremely well given the complexity of his disease. It’s easy to look back without regret given that Alexander has, so far, exceeded even the most optimistic predictions. I also realize now that not knowing was likely the better situation for me personally. Months of additional opportunity to consult Dr. Google about Alex’s diagnosis would not have been a beneficial experience.

It’s okay that we didn’t know. I might feel differently if we had, after all I doubt anyone has ever said “I wish we’d been surprised,” but I’ve accepted the way things worked out; in large part due to the conversation we had with our cardiologist that one day in clinic. What would have changed? Probably nothing. What I have trouble accepting is that for a long time I defaulted to anger, and even jealousy that other parents knew about their child’s CHD ahead of time, and we didn’t. It sounds ridiculous, I know.  I’ve given a lot of thought to this over the years, trying to understand the reason why. All I can come up with is that it’s for the same reason parents snap at nurses sometimes, or fly into a rage when a custodian rearranges the furniture in the CCU waiting room, disrupting the temporary home base they’ve established for themselves. It’s a simple reality that we’ve all faced at one time or another.

It’s easier to be angry than scared.

There’s one more reason I’m okay with how things worked out for us, and it’s not something I’ve shared before. When people ask how we cope with Alexander’s CHD, I’ve often said that Alexander’s condition has just always been there, that he’s always been our heart baby. That’s not entirely true. I hold dear a photograph that immortalizes a memory of my young family sitting in our hospital room in the hours after Alexander was born. It was only for one day of naive bliss, but for that one day Alexander was simply our beautiful new baby boy. His older sister was not the sibling of a heart baby, we were not heart parents. We had no idea what was to come in the next 24 hours. I don’t regret what became of that family; in fact I treasure our experience since more than anything. But I also treasure the memory of that day, and the perfection of that single moment in time, a moment made possible because we didn’t know.

Matthew
Matthew is a regular blogger for Cardiac Kids click here to read his bio

Check back next week for a post from Tara 

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2 comments

  1. hi,

    I completely relate to your story, our son Michael was born with a CDH and we didn’t know either, I too remember finally being brave enough to ask the Cardiologist at Sick Kids if the Ultra Sound should have caught it and we were also told that yes it should have been…(just out of curiosity- we are in Newmarket too and wondered where your Ultra Sounds were done?!) we’ve considered both outcomes and while yes there would have been many logistical details that would have allowed us to prepare for it, that first hour after birth was a fleeting but perfect time in our families life. It seems so long ago. Thank you so much for sharing your story – I’ve actually met your wife Michelle before- our sons did a yoga class together recently and she and I connected in the lobby. And it was she who connected me to the 4D FB group which has been a big help for me- just in knowing there’s a safe place for parents to support each other without judgement and who “get it”. I wish you the very best and please pass on my regards to Michelle!

    Michelle O’Reilly

  2. Hi Matthew, Thanks so much for your blog. I’ve discovered this site through another heart Mom I met at a Sick Kids conference. Our family lives in Ottawa and my son is a patient at CHEO. I’ve often asked myself this question only in reversal (Would it have been better not to know during pregnancy?) I have imagined both scenarios and can honestly say that I don’t think either way eg: knowing at the 20 week ultrasound vs. finding out by surprise following birth would be any less painful/horrifying for a parent. There is still the anger, the fear, the uncertainty, the shock etc. to work through as you face the realization that your child is somehow less than perfect in medical terms. Even accepting all this while pregnant, did not prepare me for the first night lying awake in hospital following a C-section without my son as I heard healthy babies crying around me, the weeks it took to be able to hold him, the moments they wheeled him into the ER and we said our goodbyes, seeing him with tubes fighting for his life and the post op recoveries etc. As a mother I don’t think anything was more difficult than being pregnant, feeling my baby kicking knowing he would have to fight for his life before he even took a breath and wondering if he would at all. Those months and the emotions I experienced (that I know other moms have faced) are something I can never quite explain to those who have birthed healthy children through pregnancy. I wish that I could have enjoyed painting a nursery and celebrating the moments most expectant moms take for granted. Instead I read up on CHDs, prepared questions to ask surgeons and wondered if our family should host a baby shower (silly I know!) In hindsight, I am so glad we knew. It at least prepared our hearts and minds to know that we were in for a fight and would fight with everything in us for our child. In many ways, we became parents before our son was even born – advocating for him, choosing him over any other path. It allowed us time to develop trust in our relationship with cardiologists and have somewhat a plan at birth. But then again, as you know there is no planning in life with CHD and no comfort as you allude to found on Google. Our son threw a wrench in any plan we could have had arriving six weeks early and remaining in hospital several months after surgery just to keep it interesting 🙂 I would not trade any part of our son’s journey regardless of if we knew then or later for what we know now. Today after surviving three heart surgeries with more to come in our future, I can only say there is no easy path. There is only peace in knowing we have a remarkable child and that his heart journey has blessed us beyond belief; not only in being his parents but seeing the world with less rose coloured glasses and knowing there are others among us who fight for miracles every day.

    Just wanted to share my perception as a Mom who did know beforehand. Heather, Ottawa ON

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