Hospital

Tyson’s Story

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

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

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

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

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

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

 

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Four weeks old

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I am 1 in 100

 

Melissa

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

Check back in 2 weeks for a post from Caitlin.

Sources:

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

www.congenitalheartdefects.com

 

Brothers In Arms

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Someone once asked me what scares me the most about being the mother of a child with a heart defect. I remember that, at the time, I didn’t have a thoughtful response. I have a lot of fears when it comes to Josh but what’s my biggest? Over the years I have thought about that a lot and the answer that comes back again and again is a response you will probably hear from all Moms, not just the Moms of sick kids.

I fear failing my boys, I fear that when they grow up they will not know the depth of my love for them, or that somehow my parenting them could hurt them. Too often I feel that I am not up to the task set before me. Sometimes I look at these two beautiful creations and I wonder why God saw fit to make me their Mom?

Last year we had to focus a lot on Josh and his numerous appointments, his cath. procedure and his surgery and then all the therapies and as I did I began to see something happening to my youngest son, Kaleb. He was only 2/3 at the time, he didn’t understand what was happening to his brother, he didn’t get why there was a cloud over the house. What he saw, was the amount of time he spent with my parents-in-law while I took Josh to his appointments, what he heard was the thousands of conversations about Josh. A few months ago he had a severe asthma attack and I had to take him to the ER at Sick Kids, and instead of being scared Kaleb was so excited, he was singing in the back of the car about going to this hospital as if it was Disney world or something. He honestly thought I was taking Josh on fun dates every time we went to the hospital; that ‘doctor’ was like the ‘Mickey Mouse’ of Sick Kids. The last few years have been a learning experience for me, as Mom and as a CHD advocate. My littlest son was suffering just as much as us, and yet worse because he didn’t really understand any of it.

There is no one left untouched in a family struck by CHD, but too often the ones forgotten are the siblings. The ones who love their siblings unconditionally, and yet are not included in the process and appointments. They aren’t given all the information because we want to protect them, they have to watch the most important people in their lives struggle with fears, worries, sadness and there isn’t much they can do, and not much they understand. They also struggle because the attention is all on the brother/sister. They begin to feel second best, they question if they are loved as equally by their Mom or Dad, they feel guilt over their anger towards their brother/sister because deep down they know it’s not their fault but they are too young to fully get it. They struggle to figure out where they fit in the family, maybe they act out as they try to figure out their role.

The list can go on and on. We saw all of these things in Kaleb, our sweet and compassionate little boy. He was so desperate for our love and attention and as hard as we tried, most weeks CHD had different plans for my time. Since Josh’s surgery I have been spending as much quality time with Kaleb as I can, throwing snuggles and kisses at him so often that he giggles and runs when he sees it coming. One day, back in March I said ‘guess what?’ and he of course responded with ‘What?’ and I snuggled his neck and said ‘I love you’. He looked up me and said ‘Why do you say that all day long?’ but in his eyes I saw real knowledge. He knows I love him. He’s forgiven me for now, and hopefully when CHD rears it ugly head and threatens us again I will know how to make better choices, or at least Kaleb will be old enough to understand it better.

Our heart warriors and brave and heroic little people who fight with strength I have rarely seen in adults, but lets not forget their brothers and sisters in arms who fight by their side.

Laurie

Laurie is a regular blogger for Cardiac Kids. To learn more about her or read Josh’s story Click Here

Check back next week for a post from Shannon 

Lily’s Story

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

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

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

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

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

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

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

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

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Crystal

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

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

Owen’s Story

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Owen – 5 years old

Owen was born on June 25th, 2008 with HLHS (Hypoplastic Left Heart Syndrome).  My newborn son was born with half a heart, a condition not compatible with life.

I have written those words probably a thousand times. They still hit me like a ton of bricks.

We were a typical family, almost ideal! Short of a white picket fence, we were the quintessential family.  I was a stay at home mom with two kids, a boy and a girl.  My husband and I decided to add one more to our family. His heart defect was caught in the 18 week ultrasound. Devastated does not even begin to describe what we felt. Surprisingly, we were lucky. Owen was diagnosed in utero. This meant that we were able to prepare ourselves, our families but most importantly our 2 and 3 year old children. Owen was born via planned c-section, quickly stabilized and taken immediately to the Hospital for Sick Children where a team of doctors and nurses were waiting for him.  His brother and sister were able to get a quick visit with their baby brother while I was still in the operating room. My sister carried my 2 year old in and my husband carried our eldest who at the time was not quite 4. They would not officially meet him and touch him until 6 weeks later.

This was the beginning of our “new normal”. Owen was quickly transferred to the Hospital for Sick Children.  My husband never left his side.  My sister stayed with me. She sat by my bedside until I was discharged.  Owen was born via c-section and thus I was also recovering from major surgery. It had been barely 12 hours after Owen’s birth that my husband called to tell me that the doctors needed to “intubate”.  I did not know what that meant…he told me Owen needed a machine to do his breathing for him. I was taken by wheel chair through the tunnels once a day to see my baby. I was post-op, post-natal, drugged and hormonal.  I could barely focus my eyes when looking at my son.  The monitors and machines pumping medications, counting his respiratory rate, heart rate, blood pressure, you could barely see a baby underneath all the tubes. After 4 days, I was discharged and went immediately to be by Owen’s side.  In four days, my husband sounded like a doctor, I had no idea what half the words he was saying meant.  Within days I was a virtual cardiologist.  Quickly, my husband and I began taking shifts.  One would go eat and sleep while the other was with Owen. There were times that I would sleep in the car in the hospital parking garage.

Owen’s heart defect is fatal without immediate medical intervention. Within 12 hours of being born, he was put on full life support.  By 8 days old he had survived open heart surgery, crashed, arrested for 20 minutes, had more surgery then had a stroke.  The number of procedures and tests he has been through is more then I can list. His future is filled with more of the same.  And yet this little boy smiles everyday.

When a baby is born fighting for his life, there is an entire community also fighting.  My two older children have been very much affected by having a very sick brother. They have learned about illness and death far too early.  They have learned that Owen will monopolize most of my time.  Both parents will not be at their sports events if the rink is too cold for Owen or the soccer field too hot.  Our family cannot travel to beach resorts because Owen has such a complex heart that should he get sick, the hospitals there, will not have the means to care for him.  The summer that Owen was born, they lived with my parents.  Owen’s health was so precarious, my husband and I were there night and day. When he became more stable, my husband would return to the hospital every morning after dropping the kids off at school, only to leave a few hours later to be there to pick them up. He had taken the year off work in an attempt to maintain some consistency in our kids’ lives. The reality was, their mom could not be there with them.  I was living, what seemed like a world away with my very sick boy.  We spent hours alone in a small room singing songs and watching videos.  I still remember the first time he laughed.  I knew every wrinkle, every spot, every scar on his body.  My only purpose was to do all that I could to keep him alive. I would crawl into the hospital crib with Owen most nights when he was not sleeping well.  I would spend weeks without having gone outside that when I finally ventured out, my eyes would hurt from the sun.

My baby sister got married that fall, and I was not able to do the things an older sister would do during that time…I did not get help with bridal showers, bachlorette parties or put together wedding favours. I was not able to get my dress properly fitted so my cousin did the best she could stitching it by hand. My other two children turned 3 and 5 that fall.  I take pride in creating and crafting and making each birthday party an occasion. I hand craft invitations, make my own decorations but not that Fall.  I bought their loot bag goodies at the hospital gift shop. While I was at the party, someone was sitting next to Owen.  There was somebody next to Owen 24/7.  Owen was never left alone.  He was muscle relaxed, sedated and completely unaware of his surroundings, but I never wanted him to be alone.  If he was going to die, he would not die alone.  Someone who loved him would always be by his side.

These are moments our family will not ever get back.

This is the reality of having a sick child. Nothing in our lives is the way it used to be.  Owen’s heart is always in the back of our minds.  Everyone in our lives is effected one way or another.

So, Owen’s story isn’t really just about Owen. It is about everyone who comes into our lives.  All of our family and friends.  The friends who have become family because of Owen’s heart.  His school, his therapists.  The nurses and doctors who keep him alive and care for him.  The organizations and charities we fundraise for. The generosity of strangers who have heard our story.  The media who shares his our story   and the strangers who read it.  Congenital Heart Defects is about everyone, because if your heart does not work properly, nothing else does either.

Laura

Laura Veloso is a regular blogger for Cardiac Kids.  Read her bio and Owen’s story here

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