heart dad

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 

Heart Month

A Heart Dad’s Perspective

My name is Rob, and my son Branden was born with Serve Aortic Stenosis Bicuspid Valve. Partly because of this condition, he is shorter than kids his age. I’m not the tallest fellow myself and I’ve tried to allow him the confidence in his height – no matter what it may be. I’m told often – much more often than I am told with my other kids that he looks a lot like me.

Which is curious and more than a little bit funny, because he is my step son.

Now we tend not to use the word “step” in our house. Branden is now almost 17 and I have been Dad since he was 6. We have a typical father/teen relationship. By this of course I mean he gets repetitive strain injuries from rolling his eyes at me almost hourly.

Moms, all mom’s, deserve so much more credit than they get. But Heart Mom’s deserve an extra flower, an extra hour of sleep, an extra long hug of support and understanding at Valentine’s Day I feel. How my wife, as a single mother dealt with surgeries, work, temperamental toddlers, etc I will likely never understand but I will always, ALWAYS appreciate.

But let’s not forget the Dad’s either. I may have been Dad for a wee bit less time than she’s been Mom, but I also CHOSE to be the father of a Heart Warrior. Whether by choice, or by design – fathers, grandparents, siblings, neighbours and more all contribute to the daily conditions of having a heart kid.

Sometimes, it’s easy to focus on the negatives … oh it is so easy … but there are also so many positives that a family can focus on as well. To help me focus on this I have created a “Pride Journal” for each of my 6 kids.

A few years back I went to the local stationary store, bought uniform books and since have been writing those moments of pride in my kids. My kids aren’t aware of the books … I hope the first “volumes” will be ready to share with them in a year or so and by then there will be about 4 years worth of special moments.

It’s easy during or after surgery to get lost or lose track of those moments of intense pride when things become stressful.  These books help me keep track of those special moments. First goals, good humour after surgery, character development and more – pride in your children can come in many forms.

I have written of Branden’s patience with his sisters, (he is the oldest of six and the only boy), I have written of his jokes when finished a major sugery, I even wrote of Branden’s first roller coaster ride last spring when finally given the opportunity – and although he was terrorized and likely will not ever go near another one – he can cross this off his list. He did it. He was brave, he took it as a personal challenge. Like so many other challenges in life, he climbed that mountain, and firmly planted the flag at the peak to say he did it.

Every Heart Kid has peaks and valleys. As does every relationship within families with Heart Kids as well. This is why it is so very important to recognize those moments of pride, love, and respect.

So with Valentine’s Day upon us, I encourage every Heart Family member out there to show pride. Show pride in their Warrior, show pride in the loved ones who support you. And, I personally, would like to write, however inadequately, that I have pride in all of you as well.

Not even sure I should post what I wrote as his is from the heart and mine more of a business plan, but I guess in some ways it good to write in both thoughts.

Rob 

February the month of love, the month of romance. This is what February means to most people. The excitement of Valentine’s Day, where is he going to bring you for supper, what’s he going to get you? This is what we look forward to as young teens, adults, even when you become a mom and get a night away. It’s the month your child works hard at school on heart crafts, stories about friends and math sheets with little hearts on them. Kids look forward to handing out Valentines cards to their classmates and a party at the end of the day. Maybe they made a gift of love for you. If your  in older grades you look forward to the dances and hanging out with friends. It’s really the month of hearts, pink or red hearts are everywhere.

For heart moms in the last 5 years or more, February isn’t just the month of Valentine’s Day it is also the month of CHD awareness. No other month would be better for such a cause then February.

With more and more babies and children being affected by CHD in part the wonderful world of social media, have allowed us heart parents to share our experiences, our joys and our heartache. We aren’t alone anymore. We have each other, we open our arms and hearts and families to pregnant mom carrying future heart warriors. It’s a wonderful feeling to have someone else to talk to.  Someone who gets your fears. Someone who are already been through the same steps as you have.

Because of the social media such as facebook we have been able to get in touch with heart families around North America. We have seen other people step forward to ask their cities, towns, provinces, states to declare the week of Valentines as CHD awareness week and February 14th as CHD day. The more areas that declare the more media that takes a interest in sharing the more knowledge the rest of the world will have an understand or have a small view in what our amazing heart warriors have gone through, the more knowledge people will have about CHD. Knowledge is a powerful thing. It only takes one person to start and other to follow until we are all over the media and have big function  to support and promote CHD like other illness.  It takes community to raise a child it takes a world to raise a heart child.

Shannon

Heighington-Ridley family

Shannon is a regular blogger for Cardiac Kids, her husband Rob was inspired to write his post in honour of heart month and the amazing sacrifice heart moms make for their families.