CHD

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.

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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 

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The Day I Became a Heart Mom

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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

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!

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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”.

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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

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 

The Happiest Place on Earth

In February 2013, our son Tyson was given the opportunity to have a wish granted by Make A Wish Foundation of Canada. Wish foundations like Make A Wish grant wishes to children who have life-threatening medical conditions, and as a child with complex congenital heart defects Tyson qualified for a wish. This, in and of itself, is a bag of mixed emotions. On the one hand we feel so blessed that Tyson was given the opportunity to have his wish granted, but on the other hand it is hard to face the reality that he actually qualified for such a wish. When his doctor filled out the forms to verify that Tyson had met the medical eligibility criteria required to have a wish granted, it just reinforced the reality again that our child was born with a life-threatening medical condition and his future is unclear.

The next step after approval was for Tyson to fill out a questionnaire to help Make A Wish narrow down an appropriate wish for him. He had to answer four questions. “I wish to have…” “I wish to be…” “I wish to go…” and “I wish to meet…” The last question was easy for Tyson. As a typical four year old boy interested in all things superhero, he wished to meet Spiderman, and of course Mickey Mouse.   Make A Wish granted Tyson his wish to meet Spiderman at Universal Studios in Orlando, Florida. In addition to meeting Spiderman, a week-long stay at Give Kids the World Village in Kissimmee, Florida was part of the wish package too.

Give Kids the World is a 70 acre village that exists only for families who’ve been granted a wish from a wish-granting organization. They provide accommodations, meals, entertainment and theme-park tickets to the best-loved attractions in Central Florida. Our family lived at this magical place for an entire week, enjoying all that Florida had to offer. After our experience at Give Kids the World village, we now refer to this place as “The Happiest Place on Earth.”

It’s the happiest place on earth because while you’re there, you forget about all of life’s burdens and worries. You don’t cook, you don’t clean, you don’t attend any medical appointments or therapy sessions, you don’t think about all that’s going on back at home. You just get to celebrate life with your family. The happiest moment for our family was watching the sheer thrill on Tyson’s face when he met Mickey Mouse for the very first time, and hearing him giggle and laugh when Mickey pretended to tickle him. Another moment we’ll remember forever was seeing how enthralled Tyson was with Spiderman and revelling with awe when he had his picture taken with the superhero. There’s something about a child’s dream coming true right before your very eyes that makes you want to cry with overwhelming joy.

Mickey (397)Spiderman and Ty

It may seem trivial to some, but to a family who has watched their child endure so much pain and so many medical procedures that you can’t possibly remember them all, seeing their child happy and bouncing all day long and celebrating life is priceless and satisfying. Give Kids the World goes above and beyond what you would ever expect. From the moment we were welcomed by a GKTW volunteer at the airport we were treated like royalty and we literally didn’t have to lift a finger the entire holiday. Not only did we receive more theme park tickets than there were days in the week, Tyson was also given a ‘magic button’ which allowed our family to advance to the front of every ride line up. We enjoyed great food and great service at the Gingerbread House, Katie’s Kitchen, and unlimited ice cream treats at the Ice Cream Parlour. There was nightly entertainment at Julia’s Safari Theater, daily personal meet and greets with all kinds of the Disney characters, and every time we returned to our villa after a day of fun we found a gift for each of our children to help them remember their stay. It’s like Christmas every single day. All of this can only happen because of the 1500 people who volunteer there weekly.

As if the trip wasn’t enough, when we checked we were given a ‘farewell package’ which included a CD with hundreds of pictures of our family that the volunteers had captured during our stay, a “World Passport” which included tickets to local theme parks to enjoy once we arrived back home, and vouchers from various companies willing to donate photos and even make a scrapbook of our trip to help keep the memories alive.

Just a few weeks ago we returned to Give Kids the World for a day as an Alumni Family. Tyson was excited to see Mickey Mouse again and our oldest son was just as excited to go back too – he wanted to visit the Gingerbread House for breakfast because they make the best waffles in the whole entire world. Once again, we were treated like royalty. The volunteers went out of their way to make us feel just as welcome that day as we had during Tyson’s wish trip back in 2013. And once again my husband and I sat back and witnessed our kids having the time of their lives, being silly and having fun; seeing the sparkle of excitement in Tyson’s eyes as he waited for his turn to high-five Mickey Mouse, and enjoying the village through the eyes of our now three year old daughter, who at the time of Tyson’s wish trip was too young to really enjoy it. And of course we made a few visits to the Ice Cream Parlour for unlimited ice cream treats.

Tyson with Mickey Mouse in 2015

Tyson & Mickey 2015

The whole gang with Mickey Mouse in 2015

GKTW 2015

At Give Kids the World, they really do give kids the world. It is, without a doubt, the happiest place on earth.

If you or someone you know has been diagnosed with a life-threatening medical condition and you think they might qualify for a wish, contact Make A Wish or another wish granting organization today and help make their dream become a reality.

To learn more about Give Kids the World, visit www.gktw.org

Melissa 

Heart Month

A Heart Dad’s Perspective

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

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

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

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

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

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

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

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

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

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

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

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

Rob 

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

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

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

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

Shannon

Heighington-Ridley family

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

The First 24 Hours – Owen Update

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After 6 hours of waiting, we walked in…not sure of what to expect. I mean, I had images in my mind of what he would look like, after all, we had waked into the CCCU 4 times prior post-surgery. But this time, he was no longer a baby. This time he was a 6 year old boy.

The boy that was wheeled into the operating room high on medaz, laughing and giggling was switched with a boy, covered with tubes and wires, seemingly struggling to take every breath. He was, for the moment still, excepts for his gasps. Then he started writhing and ripping at tubes, punching the air and his eyes were filled with panic. We immediately went into CCCU Mode. Every instinct to grab and pick up your child is ignored, you push your emotions to the side, you become a medical advocate for this child in front of you. What medications are being pumped into him? What are his vital signs? What is being done for pain? What is the immediate plan? Is this in-drawing normal? How much O2 is he on? After a few moments, he stopped, almost as suddenly as it started. After a short ten minutes of peace, he once again began writhing. It was indescribably painful to watch. I had to fight off my own panic to help him calm down and settle.

Owen has been through so many procedures in the past that the sedatives are no longer as effective. He is much more alert and aware then the majority of kids who have just had major reconstructive heart surgery.   They could no longer give him sedatives…as he was beginning to have apnea-like spells, signalling that if he received anymore medication, he would stop breathing altogether and have to be intubated. He was breathing through his mouth and his lips were beginning to crack and split. You could see his tongue and mouth were completely dry. Occasionally he would suck a few drops of water from a sponge.

This is how our night began. Every 10-15 minutes he would awake in a panic. At one point in the early morning hours he had kicked off one I.V. resulting in the foot of his bed covered in blood. Every time someone spoke or walked into the room he would bolt into the air. Ripping at the central line in his neck causing it to ooze blood.   We quickly learned, that when he did wake up, our face was the first thing he had to see, otherwise, calming him from his hysteria was much more difficult. I took first shift, I am by nature a night owl and the late shifts were always mine. Brian, is an early bird so these shifts work well. There is never a moment that Owen is without my husband or myself while in the CCCU. By early morning, Owen was so exhausted that his bouts of sleep were stretching from 10 minutes long to 20 minutes. Though, every touch would cause him to jump. Any sudden noise would wake him. We had assumed as many nursing duties as we were legally allowed to do. The lights were dimmed and everyone spoke in barely a whisper. All to make this, the first 24 hours post op, as painless as possible.

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Laura 

Stay tuned next week for Laura’s next post about Owen’s recovery progress.

Step by Step

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When you begin the journey of parenthood you are in it alone, with a baby growing inside you. You may have a partner but the journey of discovery is really something that you can only share with them. You carry him and feel him kicking in ways that your partner can’t feel or understand.

In the hours after Josh was born, I lay in the OR recovery room touching my empty womb and wondering if he was still alive. He wasn’t even in the same hospital with me anymore, he had already been taken to Sick Kids across the street. From there it was what can only be described as a journey, a beautiful, scary, deadly journey. Every single appointment, every single needle, surgery, procedure, MRI, ER visit, clinic visit, question, every single tear, it was on me to help make it better. I have a husband, a good husband and father but it was me who took over the medical care of Josh (and I did it because I wouldn’t have it any other way).

Last year I was asked to walk in the walk for life event that the Cardiac Health Foundation of Canada runs every year. I joined a team but I didn’t really know anyone so I found myself on the start line alone, and I walked, alone. However, as I walked I found myself on a journey of remembering, of healing. I had promised my donors that if I reached a certain goal I would do 10km instead of the 5 I had been meant to do; and the first few kilometers were fairly easy going, I walked and thought back, sometimes the memories were hard and sometimes they made me smile. The further I got the more tired I was but I couldn’t stop, step after step I continued down the path and I realized that it was similar to our lives. We get tired, but we can’t stop, we have someone counting on us in ways that they count on no one else. As I got to the 8km mark I began to pick up speed and in honor of Joshua’s strength I ran the last 2 km. Running isn’t my thing, I hate it for many reasons, but I ran because I was now on a journey too, one of healing. When I crossed the finish line I had tears in my eyes, sweat everywhere, and so much joy inside at both finishing the race I had set for myself but also knowing that I was doing this alone, for Josh. As the parent of a child with a congenital heart defect it can sometimes feel like we are alone, sometimes we feel like there is no one that understands what we are going through. Last year I was on a team of survivors, they were awesome, but they have different stories, different journeys.  This year, I am so excited that we will walk with the Cardiac Kids, we will stand tall together, step by step on a journey not one of us wanted but we are here anyway. This year, I won’t be walking alone, I will walking beside people who fully understand life with CHD from a parents perspective and I have to tell you that I am so excited, to meet all of you and to raise money and awareness with you. I will see you in May with your walking shoes on!

Laurie

Interested in joining Team Cardiac Kids in this year’s Walk of Life? Click here to join our team.

Getting to Say Thanks

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On July 14, 2011 at 7:30am, 2 men became our family’s heroes. From that moment on it seemed incredible to me that we had barely spoken to them, didn’t know their names and never had the chance to say thank you. How was it possible that there were people just out there that had played such a huge role in our lives and we knew nothing about them. This had been on my mind for quite some time and after going back and forth I reached out to Toronto Paramedic Services and asked if we could arrange to meet these men. I wasn’t sure what to expect; you see stories like this in the media and I always wondered how the paramedics really felt about these meetings. For someone who is not a paramedic, I had always imagined that the most difficult part of their job was the fact that they have to walk away without knowing the outcome of the call. Did meeting people just feel like another obligation of the job or does it actually help to bring some closure? The commander who responded to my request answered that question right away – both of the paramedics who worked on Lily remembered her call vividly and were excited at the chance to meet again.

To say that we were nervous would be a complete understatement. What do you say to the people who actually saved your child’s life, who literally kept her heart beating? We’ve had doctor’s do that, who have held Lily’s heart in their hands and we’ve been able to thank them, but this just felt different. Perhaps because there was no plan, no preparation on their part; they didn’t have scans or echo’s to look at, they just had the information that was coming up on their screen and with that little information, they created a miracle and saved us from a life of grieving. I didn’t know how we were going to get through saying hello without turning into a blubbering mess, let alone actually get out the words that I wanted them to hear.

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It was incredible to sit in a room with them, to have them see Lily with their own eyes, to her the story of that day from their point of view. They were able to give us information that we never could have known without them. They told us that, contradictory to what we had always thought, they were both in the back of the ambulance working on Lily and they actually thrown the keys to a police officer and had him drive. They were incredibly careful not to communicate with words so that my wife, who was in the front, would not panic because they were also scared that it wasn’t going to end well. We found out that one of them had made a special trip to Sick Kids after their shift ended that day to come and check up on her (under the guise of picking up a piece of equipment). We sat in silence, and tears, and listened to the 911 call and I have never been more proud of my wife. I can hear the fear in her voice, hear how terrified she was but she didn’t allow that fear to win – the recording could be used as an example of the perfect 911 call. She was so calm, communicating all of the information so quickly and clearly and she was one step ahead the entire time: she had already put our dog in the crate and opened our front door before the dispatch operator could suggest it. While I had known that arrangements had been made to give us a recording of the call, I didn’t know that we were going to listen to it that day and I started to panic when they queued it up: could listening to that call do anything good or would it just bring all of the painful memories screaming back? But something happened as we listened, listened and watched Lily sitting on the laps of the men who saved her: it felt like healing. Towards the end of the tape, you can hear the sirens wailing as the paramedics pulled up to our front door and even from where I was sitting I could feel the relief again, knowing that help was so very close.

It was hard to be eloquent though. I had so many things that I wanted to say to them but struggled to put those thoughts into words. How do you say thank you? How can you possibly put into words what their actions meant to our lives? I stayed awake quite late the night before we met thinking about what to say, because I knew that I had to be ready; that if I left it to chance I would miss something important and regret what I didn’t say. In the end, I realized that the only way I could ensure that was to write it down and I’m so grateful that I did, because while I got through saying hello, when I did try and say thank you, I was left in tears and I became the blubbering mess that I had been trying to avoid. So while I won’t share the entire letter with you, I will share this:

“To even think of a world without Lily breaks my heart and we came so close to that being our reality. You not only saved her life that day, but you saved ours as well – you saved our entire world. So, thank you. Thank you for coming into our lives on the very darkest day and giving us back the sunshine. Thank you for giving Lily back to us. Without you we would be nothing and so thank you for giving us everything.”

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Crystal

Crystal is a regular blogger for Cardiac Kids. Click here to learn more about her and to read Lily’s story.

Stay tuned next week for a post from Laurie.

**Photos used with the permission of Toronto Paramedic Services**

Brace for Impact

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The parents of kids with complex congenital heart defects will know all too well the following post. I am very aware that I am not alone. I am not the first parent to experience it, nor will I be the last. That does not give me any comfort. Doesn’t make me feel any less alone, any less unprepared, any less scared out of my skull.

Owen’s defect requires staged surgical interventions for survival. The first is done at birth, the second around the 6 month of age mark and the last at 2-3 years of age. This past June, Owen turned 6…he has yet to have the last stage. His heart was never strong enough to endure the final stage. Truth be told, his doctors never believed it would be strong enough. His function was so poor that we were all waiting for the decision to “list” him for transplant. Then, after a little perseverance and some awesome heart function medications, Owen’s heart function is ‘adequate’. This means he has been approved for surgery. Insert P-A-N-I-C.

These past few years of waiting and hoping for this heart function to improve has been gut wrenching. We had come to accept transplant as Owen’s future. But since birth, we have been told everyone is better off keeping what they were born with for as long as you can. Most people do not realize the complexity of transplant. The ramifications and the side effects, the difficulty of finding a heart that is the correct size, right type, and the precise concoction of antibodies.

But, then, with guarded confidence, it was decided he would have the final stage…the Fontan. My hand shake as I type this. He is 6…he does not remember his last surgery. I have memories of when I was 6. Owen’s sister is 11 and brother is 9. I do not need to tell you that chaos of emotions, worries, questions that swarm in my brain each and every moment. Our intention was to tell the kids after the holidays….let them enjoy time with family and friends without the cloud of angst his father and I feel. Our eldest found out by accident. The look on her face spoke volumes, “But I thought he was done?” The truth is, Owen will never be ‘done’. There will always be the next thing…

We are on uncharted territory. I have done all I know how to do to prepare to explain to Owen and his siblings. I have read books, articles, sought resources and support…..but nothing that will promise them everything will be ok. Nothing anyone can say or do will promise Owen that he will not feel pain, that he will be able to run outside, or go to another Monster truck show. No one can promise Emma and Gavin that their brother will come home unscathed…or that he will come home at all.

This is our reality. We do not know anything different. But as a family, we have learned to pull together and power through. We have done our best to prepare the kids the best way we know how. We know that things will get worse before they will get better. We are walking straight into the the thick of the battle with every weapon we have. We are braced for impact.

Laura

Laura is a regular blogger for Cardiac Kids. Check back regularly for updates about Owen’s surgery.