Surgery

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 

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.

How to Be a Friend to a Heart Mom

So you have a friend whose child was born with a serious, life-threatening heart condition. They’ve lived the past few years in and out of the hospital, they’re constantly busy with appointments, procedures and tests for their child, and you can tell that they are often run-down and stressed out. Do you find yourself thinking about them often, wondering how they’re doing but not knowing what you can say or do to help them? I have some pretty incredible friends in my life who have been with me through a lot of ups and downs in the past six years. Here are some examples of the things they have done for me in the past (and continue to do) that mean a lot to me – things which you can do for your friends who are raising a cardiac kid.   Keep in mind that many of these could also apply to friends who are dealing with other medically fragile family members – like their parents, sibling or child – so if you have friends in that situation these tips would be helpful too.

  • Be there. Listen to her when she expresses her joy about milestones reached, steps taken, teeth lost, or report cards issued. It’s likely that she treasures the little things in her child’s life because she might not have expected them to ever happen. If she’s venting about something, don’t feel you always have to find something brilliant to say; sometimes you just need to listen and let her express it. You may not always understand what she’s feeling, but she just needs you to lend her an open ear. Don’t forget to give her a warm hug if you think she may need it.
  • Stay in touch. Call her, text her, email her, or come for a visit – not every single day, but enough to let her know you care. She needs to feel supported and loved and needs her friends to stay in her life. Don’t ‘not call’ her because you feel she’s probably too busy to chat. Reach out and call her – and if voicemail picks up, leave a message letting her know that you’re thinking of her.
  • It’s ok to ask questions. When you don’t understand what she means by certain tests or procedures or medical jargon, just ask her. She wants her friends to understand what is going on in her child’s life and what he’s going through, so that you will know how to pray for her and her child. Don’t hesitate to ask her other questions like, “What do you need?” “What can I do to help?” And, “How can I pray for you and your child?”
  • Offer help. If you know she’s had a busy week filled with appointments and therapies for her child, offer to make her family dinner, do some light housekeeping, or offer to babysit her other children. Offer to drive her to her appointment if you know that the drive to the city is stressing her out. Sometimes that one appointment can take all day long and suck the energy right out of her, so having someone offer to drive could be a huge stress-relief for her.  If you think she might be run-down with the day-to-day caring of her child, offer help.   Ask her to teach you how to operate the feeding pump, administer medications, or monitor oxygen levels so that down the road maybe you could watch her child for an hour or so, while she gets out and enjoys time to herself or time with her husband and other children.
  • Offer support and encouragement when she expresses her feelings or anxious thoughts (and definitely don’t criticize them.) When she talks about fears of her child getting sick or dying, or when she worries because he’s been sleeping a really long time, don’t tell her that she worries way too much.  She is raising a child with a life-threatening condition – there is going to be some anxiety that comes with that. Her fears are very real and shouldn’t need to be validated and they are likely there for a reason. It may be because of what her child’s surgeon frankly told her when she asked about the long-term prognosis of her child, or because her child has all kinds of other health concerns that stem from the heart condition and/or surgeries – vision problems, after-effects of a stroke, side effects from medications, or learning disabilities. It could also be that she’s thinking of the families who are no longer holding their child in their arms this Christmas but are mourning for their child who fought so hard. Whether it’s post-traumatic stress or anxiety about the future, try to understand that her anxious feelings are not going to disappear overnight, if they ever do at all.   The harsh reality of CHD is that the farther away her child is from his last surgery, the closer he is to his next one.
  • Don’t give up on her in her darkest hour. She may go through difficult times when she closes herself off from you and her other friends, hiding from the world and declining invitations to go out. Don’t give up on her. It may be tough to always be the one pulling her out of her shell, but she needs you. Other people might think it’s not worth all the hassle, but real friends don’t give up on her. So remember that she needs you to not give up.
  • Invite her and/or her child to your party. When you’re hosting a social event at your house, don’t ‘not’ invite her because you think she won’t be able to come anyway. When you host a birthday party or other fun social gathering for your kids, don’t ‘not’ invite her child, thinking he probably won’t come anyway because he could get sick. It’s more hurtful for them ‘not’ to be invited, than it is to be invited and have to gracefully decline. Leave that decision up to them. They’ve been making tough decisions for their child his whole life; they can handle turning down an invitation if they need to. Invite them anyway; it’s the thought that counts.
  • Don’t send your sick child over to their house. EVER. If you’ve ever seen a child with a breathing tube, fighting for his life in Intensive Care then this needs no further explanation. Families with a heart child have likely spent weeks or even months at a time in the hospital, and they like to stay home as much as possible where they can be together with their family. When you are healthy enough to visit their home with your children, hand-washing is very important too. The virus you could be carrying on your hands and bringing into her house can be disastrous for her sick child.
  • Stop calling her a Superhero, or Superwoman, or SuperMom. While she might timidly smile when you say this, inside she is absolutely cringing because she knows it’s not she who’s the superhero, it’s her child. He’s the one who has dealt with all the poking and prodding and endless medical professionals in his face yet still finding reason to smile and be joyful when he wakes up each morning. Saying things like “I don’t know how you do it,” might seem like a nice compliment about her super powers, but saying this actually makes her realize her failings and remember how tough it really is sometimes. She doesn’t want to be reminded of how tough it is. If you insist on saying this to her, follow it up with a “How can I help make things easier for you?”
  • Be sensitive and think about what you say before you say it. It can be very difficult when she’s spending the holidays in the hospital with her sick child and all you want to talk about is the awesome time you just had in Florida over Christmas. It’s hard for her to admit that while she and her family are split apart over the holidays and she and her child are seeing the same four walls of the hospital room day in and day out, the rest of the world keeps spinning and her friends are out having awesome family time.  I’m sure she’d love to hear all about your trip once they’re home and settled again. Also, try not to say things like, “It really doesn’t look like there’s anything ‘wrong’ with him!” While this may be true and you might intend it as a compliment, we know that things can change in an instant. He may look really good today but tomorrow be lying in a hospital bed. Just because you can’t see anything ‘wrong’ with him it doesn’t mean his life is easy. Instead, you could say something like, “Wow, he looks great!”

I really wanted to keep my list simple and include only ten things. But #11 and #12 are really important too!

  • Try really hard to remember important dates. If her child has an upcoming test like an ECHO, MRI, cardiac cath or surgery, try to remember those dates (particularly the ones involving intubation and general anesthetic – those ones are the most stressful.) There might be a lot of them to remember, but you could write them on your calendar so you don’t forget. On the night before or the morning of the big day, send her a quick text saying that you’re thinking of them and hoping all goes well.  Remembering the important dates and letting her know you’re thinking of them will mean a lot.
  • Be an organ donor. Wait, what? What does being an organ donor have to do with being a good friend? EVERYTHING. It means you’re listening to her when she talks about the importance of organ donation and the fact that her child will one day be a recipient. It means you hear her. You get it. So as soon as you’re done reading this list and before you exit this page, click on beadonor.ca and register you and your family members for organ donation.   Your choice could one day save the life of 8 people and enhance the life of 75 others.

Melissa

Melissa is a regular blogger for Cardiac Kids, to learn more about her click here.

Stay tuned this week for a post from Caitlin

What’s Next?

As parents who love our kids it is our job to ensure that they have the best possible care. We give them the medications, we take them to every appointment, we hold their hand for every blood draw, we sign consent for every surgery, we shed tears with them when it hurts, we hug them when they are scared, we seek therapy for them when they need added help. In every way we seek to make their lives as great as possible, we strive to give them as normal a childhood as possible; sometimes we succeed and sometimes as hard as we try to we have to admit defeat.

I am generally a fairly hopeful person, it wasn’t until Joshua’s third surgery that it really struck me. There is no cure for what ails my son. It doesn’t matter what I do, I will never be able to fix his heart. It was a bitter pill to swallow, one that still has a bitter after taste years later. As I wrestled with the idea of Josh always having a heart defect I also began to research what his future will look like. I wanted to be as educated as possible, what I learned was disturbing but not hopeless.

In the 1950’s and 60’s a child born with a congenital heart defect had a twenty percent chance of surviving to adulthood. Fortunately, today, ninety to ninety-five percent of children born with a CHD survive. The growing number of survivors is leaving us with a beautiful yet unique problem.  Where we have never before needed an adult care system, we now have a desperate and constantly growing need for specialized cardiologists in the field of Congenital Heart Defects.

When Joshua turns 18 he will leave the safety of his paediatric hospital and enter an unknown adult world of medicine that is not ready for him. He will leave Sick Kids and be met with new doctors who may not be specialists in the world of congenital heart defects. As a parent I have learned a great deal about the medical system from pre-natal, through to pediatrics and now realize what the adult care system is currently facing in terms of larger numbers of survivors, a lack of specialized doctors and health care providers.

But what would happen if there were a place where adult CHD patients could all be treated with equal care, equal value–just one all encompassing system such as they already receive as kids? What would happen if we had a place for all CHD patients—baby, child or adult? What would happen if we went to one place for prenatal care, paediatric care and then adult care? What if Josh, who has always been followed by one specialized cardiologist, whose surgeries were always done by the same surgeon, was followed throughout his life by the same institute, the same care providers?

I see all the problems that face Josh and survivors like him, I see the lack of specialists in this field, I see the lack of education for the patients leaving paediatrics, I see the cracks in the system that are just waiting for kids like Joshua to fall through and I see a deep need for change. As parents it is our job to take care of our kids, to help them in any way that we can; I cannot cure my son, I can’t fix his broken heart, but I can do everything in my power to see that his future is as secure as possible. I can make sure I tell everyone who will listen about this silent killer who stalks our kids. I can do whatever is necessary to see a place like this dream institute can become a reality.

This is not so farfetched a dream. It only needs an action plan. It needs people like you, people with a voice, people who care about the future of our children, people with the power and will to make things happen, to ensure change.

Laurie

Laurie is a regular blogger for Cardiac Kids. To read more about her an her son Josh click here 

Be sure to check back next week for a post from Crystal

Tyson’s Story

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

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

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

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

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

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

 

4 week pic
Four weeks old

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

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

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

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

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

20102011 Winter 206
Tyson, 2 years old. Three days after his third open heart surgery.

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

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

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

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

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

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

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

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

I am 1 in 100

 

Melissa

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

Check back in 2 weeks for a post from Caitlin.

Sources:

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

www.congenitalheartdefects.com

 

Busy Waiting

Most people think when you have a heart defect, you get it fixed and you’re done! And that would be correct for several defects. But, for those of us who have children with complex congenital heart defects this is not the case. Far from it.

Complex heart defects often times require several surgeries to correct the defect. “Correct” meaning change the anatomy of the heart so that the defect becomes survivable. It is important to remind you that there is NO CURE for heart defects. Heart defects will always be there in some way. Even when a child becomes an adult, their heart is not like a healthy adult. He/she will never have a normal heart.

But I digress…several surgeries. So, when there are multiple surgeries, there is a lot of down time. This down time is not nearly as delightful as it sounds.

In the case of Owen’s heart, the treatment is generally a 3 staged reconstruction of the heart. The first stage at birth, the second at around 6 months and the last around the age of 3. With the exception of the first stage, the last two are based on weight and health of the child. The time frames of the surgery of 6 months and 3 years is an average. Owen is 6 and has yet to have the final stage. He is a bit of an exception and is not typical of the defect.

With the potential of surgery years apart your life as a family can be put on hold. Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.

Read that again.

Surgeons wait until you are sick enough to require the surgery but not sick enough that you won’t survive the surgery.

That means, we are waiting for our kids to start deteriorating. We are waiting for them to start becoming blue more often. To lose their breath more easily. To become more tired. To eat less. To become more cranky and irritable. To get colds more often and take longer to recover. We are waiting for our kids to start dying.

In the meantime, you cannot plan for things much more then 2-3 months at a time. Because, like us, you never know when this “deterioration” will start. In general it is a slow deterioration. Though, it is not impossible for an illness, such as a common cold or flu, to kick start it quickly, very quickly. For Owen, it has been this past summer….but it has been a long time coming.

Owen, ideally, should have had surgery years ago. But years ago, he was in such terrible heart failure, surgery would have killed him.   He has been on medications to improve his heart function and under the watchful eye of a cardiologist. The decision has been made to take the risk and repair his heart.

Yet, we are still waiting. Because now we are waiting for a surgery date. We are holding our breath. Owen is starting grade one, his school year will be interrupted. His brother and sister’s lives will get   flipped upside down. Our extended family will be on call. My husband will have to take a leave of absence from work. All three kids will have to, in some way be prepared….

But once this final reconstruction is complete, another round of waiting begins. Because kids with complex heart defects are never truly out of the woods. Some will need a transplant at some point, some will need several more procedures and surgeries. All will be under the care of a specialized cardiologist. All require waiting. We are permanently busy waiting.

Laura

Laura is a regular blogger for Cardiac Kids to find out more about her or to read Owen’s story, click here.

Check back in 2 weeks for a post from Melissa