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Giving Back

Shortly after we came home from Sick Kids my husband and I knew we wanted to give back and raise awareness for Congenital Heart Defects. Many parents from the cardiac floor at Sick Kids are doing wonderful things to give back and spread CHD awareness. Our family has been involved in hosting a couple fundraisers as well as volunteering at some and attending as participants. There have been galas, bowl-a-thons, bike rides, walks, Zumba-thon, a video, a book written called “The Mighty O” and a Drumathon to mention a few that were all run by cardiac families supporting Cardiac Kids and Sick Kids. Three I would like to highlight is We Believe in Abby, The Mighty Warrior Blood Drive and my son Aiden’s 6th birthday.

During the Evesons’ stay at Sick Kids and a very stressful time for the family, Abby’s parents started a chain of “Paying it Forward”. They were small acts of kindness that came in many different ways. The goal was to help someone smile in hopes they would pay it forward and surround Abby with as much positive energy as possible. It was a sense of control and helping someone out during a difficult time for their family. It did just that by spreading through the hospital, Toronto and in to cities all over Ontario and surrounding Abby and her family with the positivity they need. You can help spread this positive energy with a Pay It Forward yourself #webelieveinabby.

Gideon’s mom Jaclyn has started The Mighty Warrior Blood Drive in honor of Gideon who lost his battle to CHD in May 2015. Gideon spent his entire life in the hospital with many surgeries, procedures and blood transfusions. Jaclyn wants to honor her son Gideon and give back with this blood drive, which will run until the end of 2015. The goal set is 409 units of blood, which represents the number of days Gideon was with us. You can go to any donation center to donate and all you need is this partner code INHO368016 to help The Might Warrior Gideon reach 409 units of blood donated.

Lastly my oldest heart healthy son Aiden had his 6th birthday this past June. I was all prepared to ask what he wished for this year, but he beat me to it. He asked me if we could send his birthday gifts to the children at Sick Kids to cheer them up. My heart filled with joy that he came up with this nice gesture. I put the plan in to action by contacting Sick Kids and notifying parents what our plan was so they could buy for different genders and age groups. The kids came and they all brought him birthday cards, which we opened and read together. We talked about why he wanted to donate these toys and thanked his friends for helping him achieve his goal to cheer up the children at Sick Kids. We are so proud of him and his idea and look forward to going down soon to meet with the donations department.

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This is only touching on the many wonderful things that heart families are doing to help support each other and give back. I can only hope we continue to stick together give back and spread CHD awareness.

Heather 

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Heart of a Boy

As parents of a medically fragile child we have struggled to keep our son healthy and protected. We have handed his frail body over several times to surgeons. Allowed them to cut open his chest and change the structure and anatomy of his heart. He has been poked and prodded, medicated and bound to machines. We have watched him writhe in pain and cry in fear. There is, however, one area of raising a child with a CHD rarely discussed. Perhaps because as parents we are so grateful that we still have our babies we do not dare mention it. We know how precious life is and we have seen babies die. I too, have seen more death due to CHDs then I have any other disease. I know more children who have died then adults.  I am well aware that statistically my son should not be alive, that he should not have survived the first year of his life. He wakes up every morning with a smile on his face…

…and demands breakfast. He talks back and laughs at me when I scold him. The very thing I tell him not to do, he does. He teases the dog and sabotages his sister’s Minecraft World. He annoys his older brother and is the king of tattletales. He throws his dirty clothes all over the house and leaves wrappers on the floor. He refuses to do any summer reading and expects new toys every week. Our kitchen is his personal restaurant and he expects to be served his food in front of the TV.   He takes 20 minutes to put his pajamas on, yet can brush his teeth in under 10 seconds. He promises to be careful pushing the cart in the store and proceeds to crash into everything and everyone, I am almost certain he blocks out the sound of my voice entirely and he will befriend the worst behaved child in any given room.

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But…

…he stills sucks his two fingers while he sleeps, he will randomly say, “I love you”, he always asks his dad how his day was or how his business trip was, he idolizes his big brother and wants to be like him, he celebrates other people’s accomplishments as if they were his own, he laughs fully while watching silly movies, when he tells jokes he cannot give the punch line because he is already laughing so hard, he still likes to makes crafts and gives them to people, he often tries new things and is not afraid to approach new kids and ask them to play, he will listen to his favourite song over and over, he loves to buy gifts for people and loves to celebrate everybody’s birthday, he hates the sound of babies crying and loves to bake with his grandmother.

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Owen is a typical 7 year old boy, flaws and all. He may have some special needs, be medically fragile and have an uncertain future, but he is still just a little kid…just like any other little kid.

Laura

Stay Strong Mom

One of the many things we’re grateful for over the last six years has been the opportunity to meet some incredible people. I’ve come to understand how naive I was before Alexander was born to the challenges that so many children and their families face, and the amazing people that help them get through these challenges. We all have fond memories of specific people we’ve encountered along this journey, and I consider myself blessed to be able to count several. I’d like to share the story of one person in particular.

In the weeks leading up to Alexander’s first operation, we began to face some difficult questions. We had been told right from the start that the first surgery would likely be the most complicated, and posed the greatest risk. The Coles vein repair adds another level of complexity to the Glenn that can lead to complications during recovery.

“You need to understand, this is a big operation, and Isomerism almost always throws curveballs,” was what our surgeon told us.

Now, having never been through this before, I defaulted to the worst possible outcome in my mind. We had one last meeting with our cardiologist before the operation, and I asked the blunt question…

“Is Alexander going to make it through this?” I asked him. He gave us his estimate of Alexander’s chances. It was more optimistic than I was expecting, and led to a very interesting conversation. Our cardiologist began by telling us how hesitant he is to provide numbers.

“If I were to tell you Alex has a 99% chance of 30-day survival, you would be thrilled. The trouble is, the other 99 don’t matter, if you’re the one.” he said. “The simple fact is, I can’t predict with absolute certainty if any of us will be here a year from now. I know why you asked me, but so much can happen. It’s impossible to predict the future. If you want my best guess, I think you’ll be home with your son in three weeks,” he concluded. That was good enough for me.

Our cardiologist was an amazing man. He’s since moved on to pursue opportunities south of the border, and he’s actually not the person I decided to tell you about today. The person I want to talk about was a nurse on the cardiology ward at SickKids.

We need to take a step back to Alexander’s Glenn / Coles again, which was performed on November 11th, 2009, not long after the discussion with our cardiologist I just recalled. I would have told you at the time that Alex had a very difficult recovery. His discharge summary states that Alexander had “a complicated recovery course with persistent desaturations.” In getting to know other heart-parents, I’ve since learned what a difficult recovery can actually look like, but I won’t take anything away from how we felt at the time; we were terrified. Alexander was in the CCU for 11 days. He was extubated multiple times, had a lung infection, and desaturations that at times dipped into the 40%’s and led to an unexpected catheterization. We were on H1N1 watch, had symptoms mimicking Morphine withdrawal, and of course, our old friend Chylothorax. It was a very difficult time. Looking back, they did warn us that the recovery would be a series of “two steps forward, one step back” but they never mentioned it would be so hard to see the steps forward!

Things didn’t get easier after our transfer up to 4D. This is when Alexander’s pain symptoms were at their peak, though it actually ended up being intolerance to Domperidone, not Morphine withdrawal that was causing problems. His response to the pain was also in part responsible for his saturation issues, as he was bearing down and crying so much. On about day four up on 4D, in the middle of the night, things came to a head for Mom and Dad. Michelle and I typically balance each other out, we’re a good team. When I’m having my tough moments, she’s there to bring me out of it, and I’m usually able to do the same for her. Not on that night. We were both in a pretty sorry state. Alex had been crying for hours, they were switching back and forth between the prongs and the hood for oxygen, we were exhausted, Alex was in pain, and nobody knew why. They’d even mentioned a return to the CCU if things didn’t improve.

At the centre of our epic meltdown was a talented and beautiful young cardiac nurse. She worked with Alexander through most of the night. In the wee small hours, once Alex had finally fallen asleep, and I stopped pacing the room and sat down, Michelle started to cry. The nurse gave her a second, and then went from taking care of Alex, to taking care of us. She took Michelle’s hand, looked at her, and gently, but directly, said three simple words…

“Stay strong, Mom.”

It’s amazing to me that three words said at just the right moment can have such an impact. I remember it so clearly. I can see her face as she said them; I can see Michelle’s composure return, and with it, my calm. It was like she was reminding us she needed our help too; she couldn’t do it on her own.

“Stay strong, Mom.”

With those words, we knew that it wasn’t over, but we were going to get through it. She’d seen this sort of thing before, and understood we just needed to get through one more day, and then the day after that, and the day after, and so on. If we could stay strong for him, everything would be OK.

I’m not sure that’s what she actually meant, but sometimes the interpretation is more important. We found the strength she asked for. It was remarkable to see such composure in someone so young; under circumstances most people her age couldn’t imagine.

Alexander began to show improvement the next day. The Domperidone was stopped, his saturations stabilized, and things got better for us from then on.

Alexander was discharged from SickKids three weeks to the day from when his Glenn/Coles was performed. Our cardiologist’s “best guess” was pretty accurate after all, though we’d have never thought we’d be home in three weeks after the way the first two went. Two steps forward, one step back.

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Alexander the day he was released from his Glenn

Alexander only had that special nurse once. Whether by luck, fate, or design, she came into our lives just when we needed her. The next time we saw her was at our follow up clinic a week later. We stopped in the SickKids atrium to get a coffee, and she waved at us as she was heading upstairs.

“It’s so amazing to see how well he did after all that!” she said. “Can I ask you something strange? Is it OK if I give Alex a kiss?”

Alexander had touched her life that long night too, and of course we agreed.   She gave our little boy a soft kiss on the forehead, smiled, turned, and was gone.

“Stay strong, Mom.”

It became a mantra for us. Alex has had two major surgeries since, and many times those words have echoed in my head. I’ve repeated them to Michelle; I’ve sent them to old friends with sick children. I’ve said them to new acquaintances in our group of heart-parents, and I doubt anyone understands what they mean to us. In the absence of our experience, the significance likely gets lost.

Our cardiologist was right about another thing. None of us knows where we’ll be a year from now. So much can happen. It’s impossible to predict the future.

The name of our nurse was Natasha Cardoz.

Natasha was killed in a car accident in the summer of 2011. We found out when we inquired about her during Alex’s Fontan recovery. The nurse we asked broke down immediately, they were very close.

It doesn’t make sense, much like many things we’ve seen since we became heart parents. She was intelligent, young, vibrant, and had chosen a career helping God’s most precious creatures, and yet, in the face of astronomical odds, she was the one.

Natasha remains now a treasured memory and a face from our past; one of the many faces I see when I watch Alexander laugh, run and play. Even though it was only for one night, his story would not be the same without her.

You will meet incredible people on this journey. It’s not an easy path, but during our most difficult times, we’ve found our lives intersecting with people, and it’s felt like they were put there just for us. Let their light illuminate your dark times, and always remember…

“Stay strong, Mom.”

Matthew 

 

Branden’s 17th Birthday

As Branden gets closer to his 17th birthday my stomach begins to have butterflies. There’s excitement and fear. Yes he has made it through all the ups and downs. Oh no! soon it becomes the unknowns.  This is the year that I made a few realizations.

As he has gotten older I have taken away his protective bubble away. As a nurse once said “Make sure you don’t turn him into a cardio pelagic.” Knowing we had 10 years before his next open heart. I figured it was time to let him and help him grow up.

Then at the end of April we went for his yearly echo. I figured we would go through with flying colours. It’s only been 2 years his since last open heart. But as I saw the echo tech working together, I heard them talking “wow that’s big”. Didn’t know what they meant, but figured I would find out sooner then later. Soon we were waiting for his Dr, where we learned that his new aortic valve wasn’t handling the pressure of the job. Meaning he will need surgery sooner than the 10 years we were told. This is when I realized I can never let go or put my fear away. As the Dr  continued to talk, all I could think of was did I make the right choice? Should I of done the mechanical valve or the pig? Was the ROSS the wrong choice?

Then my fear grew, he is almost 17, would his surgery be before he left sick kids? Or would his surgery at 18, 19 be at Toronto General? We do know he can’t go to any other hospital, we know he will need to be followed closely. But his next surgery I won’t be able to be at his side. I won’t be able to sit in the ICU whenever I want. I won’t be able to sleep beside him in 4D. We won’t even know his new Dr. We are starting all over again. This time I won’t be handing over my 9 week old. I will be handing over my young man to a Dr I don’t know or  have learned to trust yet. He will be all alone in the trust of nurses we don’t know. My and Branden’s comfort zones have understandably shrunk considerably.

All I know is that I have a ton of worries, so what does he think of all this. At this time I think he is still processing this. He might not know or feel or face it until we say good bye to his Dr that he has had since he was 4. I guess a new chapter of lives will begin.

However I know now that I will always have a time bomb, sometimes I starts to shake, sometimes it starts to spark. But my fear is it will go off. But I often hear how do you do it, specially with 4 other kids. I do it because it’s all know.

Shannon

Shannon is a regular blogger for Cardiac Kids. To find out more about her click here.

Stay tuned later this week for a post from Melissa 

Mission Completion

After Owen was diagnosed with a heart defect, we were told the only chance of survival was a three staged surgical intervention…the first starting at 7 days old. Those first days in the hospital were a whirl wind of emotions, a crash course in cardiology, a test of sanity, an experiment in sleep deprivation and a stress endurance test. My husband and I quickly realized that looking at the big picture, all that Owen would have to endure in order to survive, was seemingly impossible. We had no idea how a newborn baby was going to sustain 3 open heart surgeries. So, we got realistic, we stopped looking at all he had to survive and only looked at the next step. Whether it was getting Owen successfully to the next surgery or to the next procedure, our mission never extended past a few months. There were times when we could only set goals as far as the next minute or the next second. He had to stay alive just one more minute….

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wen in recovery after the Fontan

After a long 6 years, Owen has survived all three stages. We saw him through every surgery, every procedure, every complication, every victory.

Exhale.

After the last and final stage of his heart reconstruction, Owen’s recovery was swift. He was on his feet and walking 3 days post op! Owen did struggle with fluid draining issues but that is a fairly common complication and in most cases easy enough to manage. After being admitted for a short 12 days, Owen was discharged and back home. This was a record breaking short stay for Owen. We were beyond thrilled with his eagerness to get back to his home routine and back to school with his friends. We discovered that Owen had more energy than he had ever had before. His running around did not stop from morning until night. He is able to play outside in the snow and enjoy all the things healthy hearted children love about being outdoors. He was cashing in on six and a half years of lost outdoor time!

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wen taking his first steps after surgery with his Dad and Big Sister

So, now what?

Almost 7 years ago,we naively thought that once the 3 stages were completed, Owen was done.   But it is not over, not by a long shot. He will, for the rest of his life, have a specialized cardiologist monitoring him very closely. There are medications he will be on for the rest of his life. It is almost certain that he will require more procedures…but when? There is no answer. For six and a half years we were living with the goal for getting Owen to the final stage. His entire life was about getting to the fontan. Now that we are here, we are left in a strange new world.   The number of adults who are alive with Owen’s defect is very small. It was only in the mid 1980’s when the possibility of surviving this defect was made possible. There are no older adults with his defect. They do not exist.

None.

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Owen enjoying life with a smile

Our agenda is a little bit different now. While we cannot ever act as if his heart is fixed, we can continue trying to give him as ‘normal’ a childhood as we can. We let him play and go to school like other 6 year old boys. We sign him up for sports just like we do his brother and sister. We do our very best not to limit him or stop him from trying anything he wants. We work on teaching him to listen to his body when it says, “I need to catch my breathe”.   We expect him to tidy up after himself, put his dirty dishes away and put his laundry in the hamper. Owen will always have challenges in his life, be it heart related or side effects of having a congenital heart defect. While we can never become complacent and must remain vigilant in monitoring him for signs of trouble, we can breathe a sigh of relief that for now, there are no major procedures in the horizon.

Laura
Laura is a regular blogger for Cardiac Kids. Click here to read her bio and find out more about Owen’s journey.

Sports, Scars and Our New Normal

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Spring is here! This means more time spent outside soaking up the sun running around, and summer sports like soccer and baseball are on the schedule.

There are approximately 35 known types of CHD ranging from serious to very complex. Depending on the child and their history , they may or may not be able to participate in sports and activities. Reid has TGA, which is somewhere in the middle. As a heart family it can change at any given time but for now he is stable. It’s important to remember every case is different and changes can and do happen. CHD is not a curable condition. I have never heard of the word “cured” at any of Reid’s or our heart friend’s check ups.

When we had Reid in January of 2011, we were told it was unknown if he would be able to play soccer, hockey or even run around outside with his older brother. After his first birthday he became stable enough that we started him in swimming lessons. He wasn’t very fond of the water, not to mention the parents and kids who just stared at his scar. At first I thought that I should have kept a shirt on him to protect him from people staring, but then I thought about it, and came to the conclusion that this is our “new normal”. Reid, myself and everyone else need to be comfortable because this is a part of him that will never go away. At our next swimming lesson Reid was hesitant again and the parents and kids stared while we waited, but this time instead of hiding I addressed the situation-“Reid had open heart surgery because he has a congenital heart defect”. This opened the door to conversation with both parents and the kids. We shared that we call his scar a “zipper” and that they opened it to fix his heart. After about 10 minutes Reid wasn’t hiding, nobody was staring and swimming became more enjoyable for us. Every lesson from then on we had a question asked and I was more than happy to educate them on Congenital Heart Defects. This would be our “new normal” as a heart family.

Summer of 2014, our cardiologist gave us the green light to let Reid (who was 3 at the time) play soccer. I went and signed him up as soon as I could. I filled out the form including the health section and nervously dropped it off and hoped they wouldn’t turn Reid away. The club immediately stopped me before I got out the door. They had questions about Reid and I had all of the answers that our wonderful cardiologist helped us with. The club was 100% supportive of having Reid in their soccer league, YEAH! When we told Reid about soccer, the excitement on his face was priceless. He didn’t have to sit and watch his big brother, he could go out and play on his own team. He was excited to get all suited up on his first day-cleats, shin pads, jersey and a big water bottle. Reid wasn’t as fast as the other kids and we quickly learned as heart parents that he does tire quickly. We wanted him to learn his limits so we didn’t pull him off and never pushed him, we let him tell us when he needed to rest. He quickly discovered that he needed longer rests than the other kids, but it didn’t bother him. At the end of the season, with a beaming smile, he got his trophy and he can’t wait to play again this summer.

After a summer of soccer, swimming and outdoor fun we met back with our cardiologist in November. I had an even bigger question this time, I wanted to know if Reid could play hockey. Last time I asked about hockey it was a “let’s wait and see”. Much to my surprise with Reid having a year of stable health and a season of soccer, we were given the green light to play hockey. He actually encouraged it as he felt this would be a good sport to help condition and strengthen his heart, but to let him rest as long as he needed and not to push him. In fall of 2015, Reid will get to play hockey.He is very excited to get out there and is currently practicing all the time around the house and on the driveway.

When we show up with Reid to play sports or run around on a jungle gym we always get asked “Is he okay to do this because of his heart?” For Reid, it’s okay as long as he rests and knows his limits (which he is learning).We have learned that Reid requires more sleep than the average child his age. Presently at 4 years old, Reid sleeps 11 to 12 hours a night and depending on his activity level, he will take a 1 to 2 hour nap during the day on his own. For example a 30 min swimming lesson always warrants an afternoon nap. Some say I’m lucky to have a great sleeper, but for us we know that this is Reid and what he requires to be happy, healthy and take part in activities he enjoys.

Heather

Heather is a regular blogger for Cardiac Kids, click here to learn more about her and her son Reid.

Stay tuned later this week for a post from Danielle about the day she found out she was a Heart Mom.

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 

Tyson’s Story

Congenital Heart Defects (CHDs) are the world’s leading birth defect; more common than spina bifida or Downs Syndrome, and are the leading cause of infant deaths in Canada. CHDs kill twice as many children each year as all childhood cancers combined. The term “congenital” means that the defect is present at birth.   One in 100 to 3 in 100 Canadian children are born with one or more of the 35 known types of CHDs, representing 1-3% of births. These heart defects vary in severity, ranging from a tiny hole in the heart that may never require surgery, to life-threatening defects which require open-heart surgery within hours or days of birth. Sadly, more than 4,000 babies born this year in Canada will never see their first birthday because of complex congenital heart defects, and every year hundreds of CHD children die before ever reaching adulthood.

Our family’s CHD warrior Tyson is one of the fortunate ones, who has been blessed with five birthdays so far. Tyson was born in November 2008 with complex CHDs. Even after two prenatal ultrasounds, he remained undiagnosed until he was 10 days old. He was born in the comfort of our own home, with my husband and our two midwives in attendance; all of us unaware of how sick our son’s heart really was. We had no idea that our world was about to be turned upside down.

Immediately after he was born, Tyson began having problems. He had a hard time keeping his body temperature stable, he never woke up to eat, and he slept 7-8 hours through the night. The red flags were there, and blood tests were run to check on other things, but nobody thought of checking his heart. He was even seen by the hospital pediatrician at one day old, but the symptoms at that time didn’t directly point to his heart, so he wasn’t concerned. A few days later Tyson developed bad jaundice and was increasingly lethargic. Bilirubin levels tested over the next few days all came back in the normal range so nobody really knew what was wrong.   At 6 days old, we noticed he was breathing really fast as he drifted off to sleep, but we wrote it off as something we thought most babies did from time to time. At eight days old, we were tired of worrying, and he was increasingly sleepy and lethargic, never opening his eyes or spending any time awake, and not latching well to nurse, so our midwife suggested a trip to the local hospital for some phototherapy to treat his jaundice. Blood tests were run once more and his bilirubin levels again came back normal – a little on the high side but not overly concerning – so the ER Dr was prepared to send us home. We were certain that something was wrong with our baby and insisted that we see the pediatrician. The pediatrician came in, and within less than five minutes of examining Tyson, he whisked our baby away into the trauma room, put him on oxygen, and told us “You’re right, your baby is not going home tonight,” and told us he needed to undergo some tests. The next time we saw our newborn son, his head was shaved at the sides and we saw two IV lines running from blood vessels in his head, because his arms were too tiny to find a vein. A spinal tap was done, and various tests were run. The conclusion was that our eight day old baby was in heart failure and his other organs were beginning to shut down. A preliminary echocardiogram at our local hospital revealed that he had “a rather large hole in his heart.”

From there, Tyson was transported via ambulance to Toronto’s Hospital for Sick Children, where it was discovered that his condition was much more serious than a large hole in his heart. He was born with four severe CHDs: Hypoplastic Right Ventricle, Tricuspid Atresia, Transposed Great Arteries, Coarctation of Aorta, as well as an ASD and VSD. In short, he’s missing the tricuspid valve which caused a complete under-development of his right ventricle (basically, he has half of a heart.) In addition, his main arteries are mixed up, his aorta is narrow, and he has two holes as well.

We were told that Tyson would need to undergo a series of at least three open-heart surgeries in the next two to three years of his life, the first one being scheduled in a matter of days, once the surgeons could organize his schedule. The goal of the surgeries was to re-plumb his heart, so that the under-developed right side of his heart would be essentially by-passed, leaving the left side to do all of the work.

Tyson underwent his first open heart surgery at 13 days old, spent three weeks recovering at Sick Kids, and made it home at just over one month old; just in time to spend Christmas with his mom and dad, two older brothers, and one older sister.

 

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Four weeks old

The winter months at home were extremely busy; Ng tube feeds, low-fat portagen formula every 2 1/2 hours round the clock, pumping breast milk, cleaning up the aftermath of reflux problems, and administering the seven different medications that Tyson had to take.  The medications were to strengthen his heart, prevent fluid retention, help with reflux, and prevent blood clots since he now had a Gortex shunt placed in his heart. The blood thinner used to prevent the clotting was an Enoxaparin needle which we had to inject into his legs twice a day, morning and night.

If that wasn’t enough to keep us hopping, Tyson was re-admitted three days later for an infection in his sternal incision. Once home again, we had to go for weekly appointments at Sick Kids, then we graduated to bi-weekly, and then monthly check-ups. This was on top of his regular appointments to the pediatrician, regular appointments to his family doctor for his immunizations, and monthly doctor’s appointments for the Synagis injections to prevent RSV (a virus that causes very serious respiratory tract infections.)

Despite our attempts to keep him in a bubble, Tyson struggled with his health through much of his first winter because of his compromised immune system. At four months old, his life was spared again when he was hospitalized because of a serious pneumonia infection, causing him to be intubated and in Intensive Care at Sick Kids for almost two weeks.

In May 2009 when he was five months old, Tyson had his second open-heart surgery, after which he developed another pneumonia infection. After his second surgery, his health was much better; he still seemed to catch quite a few colds but thankfully, he avoided any hospital stays for about ten months.

His third open-heart surgery was in December 2010. During this surgery, the surgeons at Sick Kids attempted to re-plumb his heart so that the left side would do all the work since his right side was effectively useless. They also attempted a repair on his left pulmonary veins, the veins responsible for carrying oxygen-rich blood from his lungs back to his heart. These veins are dangerously small and are only carrying about 18% blood flow to his heart. Unfortunately, this surgery didn’t go quite as they had planned and they were unable to repair these veins as well as they’d hoped. After several cardiac catheterization procedures to measure his pressures again and attempt a fenestration closure, it was decided that there are no more surgical options left for Tyson besides a heart & lung transplant.   So for now we are on a ‘watch and wait’ plan of action. Right now his heart function is borderline, but he continues to grow and thrive despite his many obstacles.

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Tyson, 2 years old. Three days after his third open heart surgery.

Today, Tyson is an energetic five year old who is enjoying Grade One. He is developing almost normally and enjoying all the things that typical five year old-boys love: soccer, books, Superheroes, and Ninja Turtles. He tires more easily than healthy children, and his medication prevents him from doing some activities, but overall he is living life as normally as can be expected. Unfortunately, because of the severity of his heart and lung conditions, Tyson’s biggest struggle is recurring pneumonia, and he has had more hospital stays due to this than most kids with his condition. We make use of all kinds of alternate remedies to boost his immune system and keep him healthy, and of course we have a strict hand-washing policy in place in our home, but there is only so much that we can do to keep him healthy. It seems that whenever he does catch a cold, the virus attacks the weakest part of his body, his lungs.

Having a child with severe heart defects has taught us not to take one single day for granted, to enjoy every possible minute with Tyson that we can, and to appreciate every day as a blessing from God. Every morning we wake up and are thankful that Tyson can enjoy another day with us; another opportunity for us to love him and care for him, and to see the laughter and joy that he brings to our lives.

We are often reminded that if Tyson was born in 1978 instead of 2008, there would have been nothing that they could have done for him as an infant and we would have had to take him home under compassionate care. But over the last twenty or thirty years, there have been so many advancements in medicine and technology that doctors have been able to come up with ways to prolong the lives of children with severe congenital heart defects.

Even in the early 1980’s when these types of ‘palliative’ heart surgeries were first being performed, survival rates were very low and many babies did not make it. Now however, more and more babies are surviving the first and most risky surgery called the ‘Norwood’, usually performed within days of birth. Then they are able to move on to the ‘Glen,’ typically performed between 4-6 months of age, and the ‘Fontan’ performed between 18 months – 3 years of age. Even still, Hypoplastic Right or Left Heart Syndrome is responsible for 25% of all cardiac deaths under one year of age. With those kinds of odds, we spent hours in prayer, begging God that Tyson could beat those odds, and asking Him to spare his life.

Over time cardiologists and surgeons are perfecting the techniques used to perform these risky surgeries. More and more children are making it into adulthood, resulting in a growing population of young adults who require life-long cardiac care. According to the Canadian Congenital Heart Alliance for Life, there are an estimated 100,000 adults with CHD across Canada (outnumbering CHD children.) At least half face the prospect of complications, multiple surgeries, and premature or sudden death.

In Ontario, there are roughly 40,000 adult CHDers, as well as 40,000 CHD children. However, there are only seven cardiologists who are formally trained in the care of adult CHD patients, and only four surgeons with adult CHD expertise. There are far fewer resources allocated for the care of adult CHDers than other cardiac patients, resulting in long wait times for clinic appointments and surgeries. This puts these adults CHDers at greater risk of death.

There is still so far that we have to go to raise awareness of congenital heart defects. Many people aren’t aware of the dangers of CHDs, and their cause is still unknown. Some are known to be associated with genetic disorders such as Down syndrome, but the cause of most CHDs is unknown. Often prenatal ultrasounds are not sufficient in diagnosing the problem. If a woman is at higher risk for carrying a baby with CHD (for example, if she already has a child with CHD,) she should have a fetal echocardiogram done to determine whether or not there are cardiac concerns. As was the case with our son, I had a routine prenatal ultrasound at 20 weeks pregnant, but was sent for an additional ultrasound since the first one didn’t give an adequate view of my baby’s heart. Ironically, this repeat ultrasound reported that our baby had a healthy, four chamber heart.

Since CHDs often go undiagnosed prenatally, I believe that funding should be made available for all babies to have a pulse oximeter reading shortly after birth. This would allow the doctor or midwife to monitor the baby’s oxygen saturations in the blood, and therefore aid in early detection of many congenital heart defects. In this way, hundreds of babies’ lives can be saved. I cannot explain how or why Tyson was able to live undiagnosed for 10 days, since his CHDs are so severe that he could have died within hours of birth. But I do believe with all of my heart that it was only by the grace of God that he is here today, and I now that He has big plans for our little heart warrior.

I am 1 in 100

 

Melissa

Melissa is a regular blogger for Cardiac Kids. Click here to learn more about her and her family.

Check back in 2 weeks for a post from Caitlin.

Sources:

http://www.cchaforlife.org                                                www.heartandstroke.com

www.congenitalheartdefects.com

 

The Little Things

 

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Joshua – 5 Years Old

When I was first told that our son would be born with a congenital heart defect I was too shocked to think about what that actually means. I worried more about the practical and short term things (for example: would I be able to keep my midwife? Would I be able to breast feed him?) It wasn’t too long before I started to really grasp that my worries should be more in line with; will he live? Will I ever know his smile or touch? Learning your child has a complex heart defect changes everything about you, everything about your life. In a moment you grow up. We had to learn all about the heart, we had to learn to make tough decisions in short amounts of time, and we had to learn to be not just parents for the first time but parents to a very sick little boy. It wasn’t always easy I will admit, it’s been a tough road and there are many nights I cry myself to sleep; however it’s also been a journey of discovery for us (his family). I have discovered joy in the little things, a hug, a smile, laughter. I have discovered strength where I didn’t think there was any, I have discovered courage, and I have seen firsthand what bravery looks like on the face of a child. Life doesn’t come with guarantees about health; it doesn’t come with promises of happiness, wealth or success. Courage can’t be found in someone who has never known fear, joy can’t be bought, and laughter sometimes comes on the heels of tears.

Hearing that our son had a congenital heart defect changed us, but in many ways it has changed us for the good. Our lives are made richer because each day is a gift, each smile a balm for a tired soul. Our children are not a diagnosis, they aren’t just statistics; they are beautiful, warm, loving, compassionate, little children who happen to have special hearts.

One of Joshua’s favorite things to tell you if you meet him is that he has pig valves in his heart, and he giggles. To him, it’s not a special heart, it’s just ‘his heart’ and in fact to him yours is the heart that is different because you ‘just have human parts’.

This is my first time posting for the new Cardiac Kids blog and I wanted to my first post to not be about the horror of CHD but the joy that can be found inside this world we live in. Living with illness of any kind reminds you that life is short and it’s precious and it’s very precarious. I no longer take the future for granted, when I am tired, frustrated, feeling hopeless, I look around me, look back at where we have been and smile because I have today, we have today. I have known too many ‘heart angels’ to not know how precious a gift that is.

None of us would choose this place; none of us want our children to suffer one more day, and given a chance I can guarantee that were we given a choice each of us would lay down our life if it would mean a cure for our kids. We didn’t choose to know about places like Cardiac Kids, Sick Kids, or any of the other groups and charities that help our children. We are here. End of story. What we do here is what matters now.

Laurie

Laurie Haughton is a regular blogger for Cardiac Kids. Read her bio and learn more about Joshua here

Be sure to check back next week for Shannon’s first post!

Lily’s Story

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My wife Jessica and I always knew that we were going to build our family through adoption. It always felt like the best fit for the two of us and even before our wedding we had started the process to become an “adopt-ready” family in Ontario. One of the steps you take in this process is to meet with the social worker assigned to you and go through a rather long list of THINGS that you are, or are not, comfortable with in a potential child. The list is very detailed and we found ourselves having impromptu discussions to decide things as we went along. Then our social worker asked us if we would consider a child with Down syndrome.   Jessica answered before I even had a chance to think about it: a strong, resounding, “Absolutely!”

What we didn’t know at the time was that a little girl had just been born who would come into our lives and change just about everything. She was born with Down syndrome and with that a couple of the heart defects that are more common with Down syndrome diagnosis. While her birth parents were struggling to make the hardest decision of their lives, this little girl had her first open-heart surgery to help correct an atrioventricular septal defect (AVSD) and co-arctation of the aorta. In the end, her birth parents made the tough decision to place her for adoption in order to give her the best life they could and shortly afterwards our social worker gave us a call – she thought that she had just the child for us. After the span of a couple months (what felt like the longest months of our lives), we finally got to meet our Lily.

In the long version of this story, there were home visits and a giant learning curve as we learned to feed this tiny girl with an Ng tube and syringe. We learned about the symptoms of heart failure and what to look out for. We jumped in head first, as we joined this little girl for her pre-op ECHO and EKG, and on the day she came home with us for good, we met her amazing cardiologist who walked us through exactly what they had planned for her next surgery. We left that appointment feeling a little overwhelmed and thankful that we had almost a week to prepare ourselves….until the phone rang at 9:30pm that night. There was some concern that another surgery would bump Lily’s the following week; would we be able to bring Lily in for her surgery tomorrow?

Time can play tricks on your brain and that day was the longest and fastest day that I have ever lived through. Someone had warned us earlier that Lily’s surgeon often brought families into a room to give them updates at the end of the surgery and not to worry because that didn’t mean he was going to give us bad news. So, when he appeared in front of us hours later, we weren’t shocked when he motioned for us to join him in the smaller sitting room. Then he began to speak. He told us that while the AVSD repair went incredibly well, they were able to confirm a diagnosis of Pulmonary Vein Stenosis. He explained that with this condition, the veins that bring oxygenated blood from the lungs to the heart to pump out to the rest of body narrow and close off completely. He went on to explain that they attempted to repair and open up the veins but that the prognosis was not good: the veins would continue to close over time until Lily lost function of the lung completely. In a blur, we heard words like, “progressive”, “transplant”, and “fatal”. And we just stood there, in total and complete shock: we had just gotten Lily and now we might lose her.

Lily’s recovery had a couple bumps in the road: her sternum remained open for 4 days to allow the swelling to recede; she developed a chylothorax which created a number of pleural effusions (pockets of fluid around the heart and lungs). As first-time moms, and now first-time heart moms, we were terrified. We had no idea what any of these were and what they meant for her recovery. While we were surrounded by so much support and kindness from everyone we encountered, we just wanted to be at home but at the same time, felt very secure knowing that there was always an extra set of eyes watching this little girl. Finally, after 3 weeks, we got the golden ticket: we were allowed to go home!

4 days later, we wished we had never left. We had an exhausting 24 hours: Lily wouldn’t settle and would sleep for only 20 minute bursts before waking up in tears. Shortly after I handed her off to Jessica so that I could get some sleep, I heard a scream: Jessica telling me that Lily had stopped breathing. The next few hours are a blur of calling 911, watching paramedics grab her and run out of the house, having her revived at our local hospital and then transferred to Sick Kids, watching as the police shut down Bay Street so they could get our baby there faster.

We never did find out what caused Lily’s cardiac arrest, a thought that still haunts us to this day. After being readmitted to Sick Kids an ECHO and heart catheter showed that Lily’s left pulmonary veins had closed off completely and she no longer had function of that lung. They also found that a blood clot had formed on her tricuspid valve. There was no way of knowing which of these caused her cardiac arrest or if it was something else entirely and suddenly we were in a new reality. Within 3 days, Lily started having seizures that were indicative of a brain injury, which was confirmed by an EEG and MRI. It seemed as though the cardiac arrest had hit a giant RESET button on Lily’s development and we had a brand new infant. The brain injury affected her sight and caused a Cortical Visual Impairment: for days, we shone flashlight and light-up toys in front of her, hoping desperately for a reaction but she looked right through them.

That was 2 ½ years ago and it’s been the most amazing journey. We’ve had our share of struggles: worrying about weight gain and a developmental delay that sometimes feels impossible to overcome. But then we just look at Lily and see all of the amazing things she has done since that terrible, horrible, no-good, very bad, day. Her vision has come back, she is babbling and giggling up a storm and she is starting school in September. Her heart is strong and her lung pressures have remained stable: we are on yearly ECHO’s! While we have no idea how her future will play out – the word transplant is still on the horizon – she amazes us every single day and she continues to astonish us with how much willpower she has just to keep moving forward.

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Crystal

Crystal Trumper  is a regular blogger for Cardiac Kids.  Read her bio and more about Lily’s story here

Be sure to check back next week for Jean’s first post!