Malcolm: An Inspiring Story

Malcolm was born with Hypoplastic Left Heart Syndrome (HLHS), a rare congenital heart defect that results in an underdeveloped left ventricle. Basically, his heart functions as though only one side of his heart exists. Malcolm's family narrates his story here.

 

 

 

Malcolm's start in this world was as any other seemingly healthy child but, unbeknownst to us, the situation was about to take a dramatic turn. Two days after his birth, Malcolm went into respiratory distress on November 20, 2006. The medical staff who were trying to stabilize him were on the phone over the next 6 ½ hours with SickKids Hospital attempting to assess his condition. Finally, once stabilized, Malcolm was transferred to SickKids. Still, no one knew what was wrong with him.

 

Upon completion of an echocardiogram the following morning, we received the devastating results... Malcolm had HLHS. We were given three options 1. Compassionate care – make Malcolm as comfortable as possible and allow him to pass peacefully 2. Heart transplant or 3. Three-stage reconstructive surgery. We chose the three-stage reconstruction, which was the beginning of our little brave boy's journey.

 

At 5 days of age, Malcolm underwent the Norwood operation performed by Malcolm’s surgeon, Dr. Glen van Arsdell. After 6 weeks of struggling and recovering, he was prepared to go home for the upcoming holidays. However, the echo performed prior to release indicated an aortic clot (a rare occurrence)... no release. After prescribing a blood thinner to address the clot which was to be administered by injection by us at home, we returned home for a belated Christmas but returned to the hospital a couple of weeks later for suspected Necrotizing Enterocolitis (NEC). Fortunately the NEC never materialized. The next several months were filled with medical visits, home nursing visits, feeding issues, physiotherapy.

 

We began to develop a routine and began to accept Malcolm's CHD and the fact that his life unlike many other little boys would be filled with medical appointments and uncertainties. Ironically the CHD was not what we struggled with every day... it was feeding Malcolm. As heart parents, you come to terms that you cannot change your child's diagnosis - it is out of your control - but eating on the other hand is a basic activity that you as a parent should be able to manage. Malcolm, like so many other children with HLHS, struggled with gastroreflux. Malcolm was equipped with a nasogastric tube from the time he went into respiratory distress. His formula and medication were syringed by us into his tube... boy did we get some odd stares in restaurants or on our walks. Feeding became such a struggle that at one of regular cardiac clinic visits, we requested Malcolm's cardiologist, Dr. Edgar Jaeggi, to please insert a g-tube. He said no way... he knew Malcolm was going to eat... he had started taking a little bit of food by mouth. In hindsight, what a great decision.

 

On March 31, 2007, we received the call notifying us that in three days Malcolm would have his Glenn operation. Amazingly, Malcolm recovered very quickly from this second-stage surgery and we went home in 7 days. Malcolm was still being fed the majority of his meals through a nasogastric tube (NG). Two months later, his nasogastric tube was removed. He was finally eating on his own.

 

After the Glenn, we returned to work & we have incredible employers who accommodated us and a great network of support. Malcolm hit every developmental benchmark and life became normal - going to the park, visiting friends, road trips.

 

On January 12, 2010, Malcolm underwent his final reconstructive procedure - the Fontan. After only one day in the CCU, he was transferred to the ward and was recovering quickly. On day 3 it was apparent that fluid drainage, which occurs with many children having the Fontan, would be an issue. That, coupled with a positive test for chylothorax, indicated that his recovery would not be completely straightforward. After much consideration, we decided to have him released from the hospital one week after the surgery to recover. Malcolm came home with a chest drainage tube (jp tube) and was on a strict minimal/no fat diet to treat his chylothorax. We were so nervous about taking him home and trying to cope with this new development. But, after speaking with the incredible staff at the hospital and a legion of heart moms that we had been able to connect with through various social media sites and at the hospital, we bravely trudged ahead. After two weeks at home with medication and special dietary requirements, the jp tube was removed on February 1.

 

As part of the post-op treatment for the Fontan surgery, Malcolm had to remain on warfarin/coumadin (a blood thinner). He was to remain on this medication until the fenestration (hole) in his heart (left open to alleviate pressure building up that could cause a stroke) was closed by heart catheterization. This was a big transition for Malcolm. He was no longer a baby and was aware of every needle and procedure. He was distraught every time we would go to the lab at Sick Kids for his levels to be tested. We finally managed to get a coagulation monitor at home which saved an endless amount of tears. Coupled with having to have an eagle eye watching him at the playground, in September 2011, Malcolm enrolled in Junior Kindergarten. The school was so accommodating. He was given special attention in gym and in the playground. He loved his first year of school. Up until this point in his short little life he had never been around so many children or been cared for by anyone other than our extended family. He entered a home daycare which he also loved. Things were looking up for all of us and to top it all off at a 12 month follow up appointment, Malcolm was removed from the blood thinner, his fenestration had closed on its own. This meant no catheterization procedure.

 

In the meantime, Malcolm has thrived! He is grown so tall and loves to dance, play trains, read, and hang out with his friends. Malcolm was given the incredible gift of a wish trip to Disney in May 2011 from Children's Wish Foundation. He is still talking about it.

 

It has been 2 years since Malcolm's last surgery. Hypoplastic Left Heart Syndrome cannot be cured. Malcolm has undergone a three-staged surgery to improve the function of his heart and to increase the life of his heart. His condition is palliative.

 

Malcolm's success is linked directly to the research being done into congenital heart defects. We cannot be more thankful to everyone involved with CHD research and those responsible for his care. Without these individuals Malcolm would not be doing so well.

 

Many of us who are presented with difficult situations ask ourselves why me? Malcolm's godmother responded to this question... because God knew that you were the ones who would be able to care for such a special gift... we were chosen for him, and he for us.

 

Malcolm is a happy, loving, curious and active little boy. He is the love of our lives and we are truly blessed to have the most incredible boy to love. He is the heart of our family.

 

 

To view Malcolm's picture gallery, click here.