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 6^th 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.

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 

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.

 

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.

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 11^th, 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.

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 

 

Balm for my Heart Mama Soul

I think I can speak for all parents of cardiac kids when I say that our life is filled with a significant amount of anxiety and worry. We all deal with it in different ways and some are better at building their walls than others, but the anxiety is always there.

Doctors told us right from the start of Tyson’s life that there were absolutely no guarantees for his life. His surgeon told us quite frankly that he might do really well after his surgeries and live a relatively good life, but there will always be the possibility that one day we could walk into his bedroom in the morning and find him gone. After three open heart surgeries, five heart cath procedures, and more cardiac tests and procedures than you can shake a stick at, no one can promise me that he will live a long, healthy life. No one can say for sure what his long-term prognosis is. CHDs are a lot like a tornado. You can use satellite to track its course and warn others of impending doom, but ultimately the tornado moves in an erratic path with no rhyme nor reason. It can completely destroy one house while leaving the house next door unscathed. In the same way, one child who the doctors think don’t stand a chance of making it through another surgery can end up kicking CHD in the butt and live a long, prosperous life. The other whom they think is fairly strong from a cardiac perspective drops down dead on the floor one day because her heart just suddenly gives up. It’s true that in life there are no guarantees, but for the lives of thousands of cardiac kids this holds true even more so.

Some days I worry more than others. For Tyson’s whole life, we’ve critiqued and analyzed every little sniffle, every cough, every time he vomits, every day that he appears to have less energy than normal, every time he sleeps more than normal, or says he has a sore chest, or a sore head, or that he feels dizzy, or that his legs hurt. All these things might be normal things that most kids complain about from time to time. But for Tyson, any of these things can be signs and symptoms of congestive heart failure or stroke, brain hemorrhage or blood clot. Being on blood thinners puts him at risk for stroke or bleeding in the brain so we have to closely monitor his INR levels, making sure they are not too low and not too high. Having an AED in the house is not exactly what you’d consider normal, is it? Sending him off to school every day with the chance that the simplest cough could develop into pneumonia and admit him to the hospital – that is worrisome. Having only 18% blood flow going to his left lung, his oxygen levels are low, making him at risk of being hospitalized with what a healthy child would experience as a common cold. And the CVS team at Sick Kids has determined that they’ve done all they can do for his heart and the next step once his heart starts to decline is ‘heart and lung transplant.’

I definitely don’t worry about where Tyson will go when he dies. I have complete confidence in my God and Father, that His promises are true for Tyson and that he’ll have a brand new heart in heaven. That he’ll walk with Jesus with oxygen saturations of 100% and he’ll never need to take another pill or have his sternum sawed open, or get poked with another needle or endure another IV ever again. I definitely know where his home is! But what I worry about most is while Tyson’s heart is made whole, we who are left behind will be left with a huge hole in ours. I worry about the hearts of his older brothers and his sisters, his parents, the hearts of his aunts and uncles, cousins and friends.    Would we be able to carry on without him? Would I be able to guide my family through a lifetime of grief and mourning without our Mr. T? I have no control over God’s plan for Tyson’s life. No control over whether or not someday my children may have to mourn the loss of their dear brother and playmate.   There’s no bandaid I can put on Tyson’s heart to heal it, no medicine he can take to prevent his death, no magic potion to guarantee he won’t ever be hospitalized again.

So for now, we love him. We snuggle him close and hold him tight, kiss him often and enjoy every single second we’ve been given. Laugh often and hold on to as many memories as we can.

I can’t count the number of times other Heart Moms or Dads have asked me how we came to the decision to have another child after all we’d been through with Tyson. “Weren’t you worried you’d have another child with a heart condition?” “Weren’t you scared how you were going to juggle your heart child at the same time as having another baby?”   “How did you decide?”

To be honest, we didn’t ‘decide.’ In reality, the very thought of bringing another baby into the crazy hospital-life we lived terrified me! You can imagine my surprise and fear when I found out we were expecting again when Tyson was not even three years old. Sure, he had completed his three ‘scheduled’ surgeries but his challenges were far from over! He was still hospitalized once or twice a year, and even when he wasn’t in the hospital, he was often sick at home with pneumonia or fighting some kind of virus he had caught; and during the times that he was well we were often hopping from one specialist appointment to the next.  Not only that but we were also raising three children older than Tyson, each with their own unique needs and challenges, each needing our love and attention too. How in the world could we give time and attention to another baby at this time in our life?

I’m so thankful that we have an awesome and loving God that knows our needs before we even ask. As much as she may have been ‘unplanned’ in my mind, God knew that our little Addisyn Faith would be balm for this Heart Mama’s soul. She is exactly what this family needed.

I know these blogs posts are typically supposed to be about our heart warriors. But the next part of my post is going to focus on our heart-healthy daughter Addisyn. I write these words to encourage other families with cardiac children that you CAN move on after having a child with a heart condition! You CAN have healthy children after having a child with CHD! Our son’s cardiologist told us that because we already have a child with CHD our chances of having another CHD child would double – but then he quickly added that the chance of anyone having a child with CHD is about 1-2% so that means the risk of having another child with CHD is 2-4%. Recurrence risks vary considerably depending on the type of CHD, so he said the likelihood of us having another child with a right or left ventricular anomaly was highly unlikely. If you have a child with a CHD, the risk of having another child with a CHD is higher than that of someone without an affected child, but it is still quite low. You may in all likelihood have a child with a completely normal heart.

Was it a stressful pregnancy? Of course! There were minor complications that resulted in several added appointments (as if we didn’t have enough appointments already!) because of an antibody issue in my blood. I was referred to an OB at Mt Sinai in Toronto and had several level two anatomy ultrasounds there to ensure that the anti-C was not attacking our baby’s red blood cells. We also had a fetal echo at Sick Kids so that we could be prepared in the event that we were given another baby with CHD. Thankfully the fetal echo revealed that our baby girl had a healthy, four-chamber heart.   On top of my regular ultrasounds at Mt Sinai, I also had to have bi-weekly bloodwork to monitor the anti-C titre levels. It actually worked out really well because Tyson also needed bi-weekly bloodwork to monitor his INR levels at the same time. Being only two and a half years old, he was not always able to understand why he needed to be poked all the time so it was super helpful that we could do our bloodwork together – and be brave together. The extra appointments added extra stress and anxiety to our lives resulting in several trips to Toronto every month for the duration of my pregnancy.

Sometimes I worried how it was all going to work out, knowing there was a chance Tyson could need a heart and lung transplant if his heart deteriorated any more, and knowing that he could be hospitalized with pneumonia again at any given time. Sometimes I wondered what God was doing in my life; how could we possibly bring another child into the world with all that our family already had on our plates? I admit, I was exhausted with all the appointments that we had for Tyson and for our unborn baby, and the anxiety level in our house was at an all-time high. Our oldest son, who had taken on so much responsibility being the oldest sibling of a CHD warrior, had also endured so much emotionally that year and he struggled with depression and anxiety that winter too. It’s not something I talk about with a lot of people because I feel 100% responsible for the anxiety that he felt. If only I had handled things better at home, perhaps the anxiety wouldn’t have rubbed off on him.

But let me tell you that the birth of our little Addisyn Faith was so very therapeutic for all of us. In the end she was born healthy and well. A cute little six pound twelve ounce bundle of joy, appropriately named because she certainly did “Add to our Faith.’ We had to throw all caution to the wind and just have faith that God knew what He was doing. And He certainly did know what was best for us – of course, how could I doubt? Addisyn turned out to be the BEST thing that could have happened to our family. She was a very happy baby right from the start, sleeping well though the night and very happy during the day. Tyson was hospitalized with pneumonia again when Addisyn was only four months old, but Tyson was able to stay at our local hospital so it was much easier for Brian and I to take shifts at the hospital. And my Mom was able to take some night shifts too so that Addisyn and I could sleep in our own beds. So it all worked out, as it always does.

At times I feel I was robbed of the joys of Tyson’s infancy because we spent so much time doing things that most new Moms don’t ever think about doing: weighing diapers, measuring fluid intake, learning Ng feeds, Enoxaparin injections, cleaning up the aftermath of reflux problems, weekly trips to Sick Kids, stressing over med times. But giving birth to Addisyn healed me from the trauma of Tyson’s first few years of life and restored some normalcy back to our lives. I took her home, nursed her when she wanted to be nursed and let her sleep when she wanted to sleep. Never once did I weigh her before or after a feed, or poke her tiny legs with a needle, or have to wake her up from her nap because it was time for her medication. I was allowed to snuggle her like a newborn baby needs to be snuggled and she spent many hours curled up at my breast bonding with me exactly where a new baby belongs. She allowed me to put closure to my child-bearing years with good memories instead of traumatic ones.

Today she fills our lives with joy and laughter and keeps me busy at home when Tyson and his siblings are at school all day. Because she and Tyson are four school years apart, she will continue to bless my stay-at-home days for a little while longer yet. I often ask myself what I possibly would have done with my life once Tyson hit school full-time and I had no one else to focus on. What would I possibly have done with all my spare time? Now I spend my days laughing at all Addisyn’s idioms like, “Mom, can you please put tiggy-pails in my hair today?” And the way she can finish the sentences in her favorite books before I even have the words on my tongue. She is so full of spunk and life that I simply can’t imagine my life without her. Even though she wasn’t necessarily ‘planned’ by us, God had a plan in mind for her and for us, and He knew how therapeutic she would be for us.

I want to encourage you, heart Moms and Dads that you can heal after the trauma of having a cardiac baby. You can move on and have another healthy, happy baby. I’m not saying that having another baby will cure your anxiety, but it will absolutely help to dull the upsetting memories that fill your head; the memories that have robbed you from the joys of a healthy baby. In this life of tornadoes, Addisyn Faith was the shelter that I needed to take my mind of the raging tornado for a little while and enjoy the sunshine again.  Will I still feel anxiety from time to time? Of course. I’m pretty sure the anxiety will always be there. But Addisyn Faith was balm for this Heart Mama’s soul.

Melissa 

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….

Owen 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!

Owen 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.

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.

The Day I Became a Heart Mom

My heart warrior is 4 years old. Isabella is a determined, smart, beautiful, energetic and happy little girl. She’s my miracle baby. However, after three open heart surgeries, countless procedures, and many pokes and prods, it never gets easier. You think that it would and that it would be routine for us at this point. But it never gets easier.

When Isabella and her twin sister Olivia were born we were over the moon in love! Five days after the girls were born, we were discharged from the hospital and told to follow up with a cardiologist the following day. The paediatrician heard a murmur in both girls. We heard it was not unusual for babies to have murmurs, so we weren’t overly concerned. So much so that I didn’t even go to the appointment. After taking the girls to their first paediatricians appointment in the morning I opted to stay home. Not even a week from having a c-section my body just couldn’t handle another excursion. So, my husband Vince took the girls downtown with my sister-in-law Lisa, promising to be back in a few hours. Little did I know that those few hours were going to turn into an agonizing few days. The phone call I received from Vince hours later told me something was very wrong. He told me that the cardiologist wanted to do a few more tests on Isabella and that they were going to SickKids. My sister-in-law Susan would pick me up and bring me down so I wouldn’t have to wait at home. He told me not to worry but I knew he was lying. Waiting for Susan to pick me up was excruciating. I knew something was wrong but no one was telling me anything. When we finally arrived at the hospital I knew my instincts were right when I saw my husbands face.

My husband is a very strong man and I have only seen him break down a handful of times. He was trying very hard to keep it together but he broke when he saw me. “Something is wrong with her heart babe”. He led me down a hall, passed Lisa holding Olivia, into a room with a bright yellow sunflower on it. I’ll never forget that room. Every time we are in the emergency room at SickKids and I see that door, this memory comes flooding back to me like a ton of bricks. There in the room, filled with about 10 doctors and nurses, lay my Isabella. She looked so small on that big bed, covered with wires attached to monitors. I broke down. Somehow I got put into a chair and was told that my daughter was very sick but that they were going to do whatever they could to help her. The rest of the evening was a blur. Isabella got moved upstairs to CCCU where they were going to do a 10 hour echo. I didn’t even know what an echo was at that point. All I knew what that my baby was sick. How could she be? She was absolutely perfect!

That evening was our first of many nights spent at SickKids. Our family and a few friends came down to wait with us. We were given a parent room and my sister-in-law and brother-in-law camped out in the waiting room. The next day we were led into a board room and told the awful news. Isabella had a congenital heart defect called Right Atrial Isomerism. It meant that her heart hadn’t formed properly and that she only had one ventricle. She would need 2 if not 3 surgeries in order to survive. This condition also affected her organs, which were oddly shaped and placed and she did not have a spleen. I didn’t hear much after that. I just sat there in shock. Why was this happening to us? How did no one see this? Or did they see it and not tell us? In the end it didn’t really matter. It was happening and I was shocked, terrified, angry and very sad. Most importantly, I wasn’t ready to go home with my heart baby. I wasn’t ready for any of this! Thankfully, we have an amazing support system. My sister-in-law and brother-in-law offered to stay with Isabella on 4D so we could go home with Olivia, break the news to our parents and siblings, and try to get some sleep. It was difficult to leave her but she was in good hands, with people that loved her and would later become her god parents. We knew we needed to take care of ourselves and Olivia because tomorrow was going to be the start of a new life. Our life as heart parents.

That day was 4 years ago. However, even after three open heart surgeries, countless procedures, and many pokes and prods later, I remember that day like it was yesterday. Since then Isabella has defied all odds. She dances, runs, swims, sings, plays make believe and simply never stops moving! She is pretty much on par with her twin sister. She is excited to start Kindergarten in the Fall and her hospital appointments are few and far between. When I think about where she was in the first month of her life and how sick she was, I am amazed and grateful at how far she has come. I am thankful each and every day for everyone at SickKids. The surgeons, the nurses, the support staff… We made special connections with her nurses in those first few months and still keep in touch. Those are lifelong friends we have made as they too saw Isabella at her worst and are proud and happy to see how far she has come.

“You never know how strong you are until being strong is the only choice you have.” Getting the awful news that your child has a cardiac condition is not something I would wish on anyone. It is scary and sad and it never gets easier. However, going through this journey Isabella has taught me more in her 4 years of life than I could ever teach her. She is my inspiration and determination to be the best mother I can be to her and Olivia. It is because of Isabella that I try to live each day to the fullest and not sweat the small stuff. I am extremely proud of my little heart warrior. She calls us (her sister, daddy and myself) “heart warrior helpers” because we, along with the doctors, helped fix her heart. For that I am truly honoured and proud to be a heart mom. #heartmommy4life #heartwarriorhelper

Danielle

Danielle is a regular blogger for Cardiac Kids, click here to read more about her and her Heart Warrior Isabelle

Stay tuned for a post next week from Crystal

Sports, Scars and Our New Normal

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.

1 in 100

1 in 100…Times three. In my family, there are three of us born with CHDs, myself, my nephew, and my daughter, Amelia. Amelia is my cardiac kid born with complex congenital heart defects in May 2009.

My awesome nephew, Aidan, has a CHD that is electrical in nature, it’s called Wolff-Parkinson-White (WPW). In WPW, there is an extra electrical pathway between the atria and ventricles. A symptom of this syndrome is a rapid heartbeat. When he was around 3 years old, he started telling us that “his heart was beating” and our natural response was “that’s right, your heart is beating, good for you, what a smart kid”. Over a six month period or so though, he started mentioning his heart beating a couple of times like this. It wasn’t until he said it during no activity, my sister put her hand on his chest and could feel the rapid heart beat. She knew something wasn’t right and brought him to the emergency room at Sick Kids. In an incredibly fortunate coincidence, the ER doctor that examined Aidan that day had a 5 month old child that had recently been diagnosed with the same syndrome and spotted it right away. As with most people with WPW, he lived relatively symptom free with a few episodes of tachycardia yearly. At around 8 years old, he started taking medication but that seemed to make him more lethargic and out of breath. When he was around 17, his episodes started to increase in frequency and it was decided that he would go through with a heart catheter ablation that would destroy this extra pathway, with a success rate of about 95%. He was 3 days shy of his 18th birthday when he had the catheterization done at Sick Kids. Being able to have this procedure done at Sick Kids played a huge role in the decision to have it done at all. Any heart surgery or procedure is frightening so electing to have one is an extremely scary decision to make. What made his decision easier was his baby cousin, Amelia. Amelia was almost 2 at the time of his procedure and had already had more heart catheter procedures than I can remember, that’s not including surgeries. He gave himself the “suck it up” pep talk and was wholly inspired by our little trooper. It’s been 4 years since his heart catheter ablation and 4 years since he’s had an episode.

As I mentioned, Amelia was about 2 years old when Aidan went in for his procedure. That means I had also just spent about half of those two years in and out of Sick Kids, and a lot of time in that cath lab. So as an amusing side note, when I showed up to the recovery to see Aidan, the nurses instantly recognized me but scanned the beds looking for my little girl not expecting me to be there for the over six foot tall man, with his feet hanging off the bed. Also amusing is that his one complaint coming out of the catheter is that his ankles were hurting for that very reason.

Our sweet baby girl, Amelia was born with DORV (Double Outlet Right Ventricle) along with other heart defects that often accompany that diagnosis like AVSD, holes between the atria, holes between the ventricles. She also has mitral valve issues. Her condition is by far the most complex of our three diagnoses, requiring the most intervention, follow up, monitoring, lifelong care. In other words, completely terrifying, with an unknown outcome. What DORV means is that both her pulmonary artery and her aorta were attached to the same ventricle when each of them should have their own. One of the “fixes” for this defect is to do just that, attach one of the arteries to the other side but because of the other heart issues like the mitral valve problems, they could not do this type of surgery. They were always fairly certain that they were not going to be able to do this but they couldn’t know for sure that this wasn’t going to be an option until they actually went into her heart and took a good look. Again, what a terrifying thought. With the feeling that they were not going to be able to do the switch, we were told that Amelia’s best option would be to move towards a univentricular heart, ignoring the fact that she has that left ventricle at all. She has had three surgeries to “repair” her heart thus far, a PA (pulmonary artery) banding, the Glenn, and the Fontan. We don’t know, long term, what that will mean for that left ventricle as it shrinks inside of her not getting used.

Before my daughter was born, I hadn’t given much thought to the fact that I had heart surgery as a baby. I didn’t know the statistics of 1 in 100. I didn’t know because my case was a relatively common and easy “fix”. I had surgery in 1980, at the ripe old age of 2, and have had no follow up since. We didn’t ever talk about it growing up beyond anecdotal stories and there was no internet or Dr. Google back then for me to do extensive research of the topic. I had a PDA (Patent Ductus Arteriosus) closure. If you happen to google PDA, it’s third on the list behind Personal Digital Assistant and Public Display of Affection, can’t be that serious of a defect, right? The DA is something that usually closes within the first few weeks of life, it’s one of those things we need in utero but as soon as we start breathing air, it’s no longer required. Normal blood flow is affected if it does not close and my family doctor heard that through a murmur. The same family doctor that heard Amelia’s thundering murmur as well. As I saw when strolling the halls of the cath lab, they do the PDA closures there for the most part. I couldn’t believe that the surgery is done through cath when I have a scar that traces my entire left shoulder blade – check it out. It’s obviously much more faded now, 35 years later but still very visible. Now the procedure leaves no scar at all, unbelievable. Oh, and my surgery was done at, you guessed it, Sick Kids!

I plan to eventually write about Amelia’s surgeries here as well. I have many notes from those days but in all honesty, I fear for the safety of my laptop when I start reading them over again, it is not waterproof afterall. The Glenn was the worst of the three surgeries for her which leaves me with some of the most traumatic memories from our many stays at Sick Kids. One of the lines I repeat over and over again about the first 3 ½ years of Amelia’s life is that her time in hospital recovering from surgeries is something she’ll probably never remember and something I’ll never forget. At least she won’t remember the same things I do about her stay. Since I have a basis for comparison, I was 2 when I had my surgery, there are 3 things I remember from my stay:

1. waiting in line to have blood drawn and dreading it

2. a nurse scolding me for taking another child’s scissors in the playroom (or possibly for just      having scissors, I was 2 after all)

3. my daddy brought me a pint of strawberries (this one seems sweet but it was traumatic because he told me he had gone strawberry picking for them which meant to me that he had gone strawberry picking, without me, while i was stuck in the hospital. Having fun without me. It wasn’t until many, many years later that I realized he was just kidding about having gone, ha)

That’s us, three CHDers, one family. I mentioned to a CCU nurse one time that I had had heart surgery as a child and she asked me if it made me feel better about Amelia and her condition, knowing that I came through it okay. I remember replying that no, it did not, it made me feel guilty and responsible for causing this to happen to her somehow. I know logically that is not true and I’ve been told time and time again by doctors and nurses that is not true but that’s how I felt at the time. Now that we’re almost 6 years into this journey with Amelia though, I can say that having been born with CHD as well does make me feel better. Amelia and I can share a sense of camaraderie through our battle scars or as she said to me the other day, “me, you, and Aidan are the lucky ones in the family because of our special hearts”.

Tara

Tara is a regular blogger for Cardiac Kids. Click here to read her bio.

Stay tuned later this week for a post from Heather 

We Didn’t Know

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