1 in 100 - That is how many children are born with congenital heart defects.
It was at my 20 week ultrasound that we discovered that something was wrong. I remember the ultrasound technicians’ uneasy breathing. I remember him going over and over the same images. I remember how it was taking longer than expected to complete the ultrasound.
A grim faced doctor gave us the news that they had discovered serious heart defects. After a fetal heart echo at Sick Kids the next morning doctors confirmed that William had a slew of issues including; dextrocardia, double outlet right ventricle (DORV), pulmonary atresia and large ventricular and aortic septal defects. Essentially, he has a VERY funky heart that would require a number of open heart surgeries to correct.
William was born on his due date on August 4th, 2010. On the outside, he looked perfect. However, on the inside his heart was very sick.
After being stabilized at Mount Sinai, William was taken to Sick Kids Hospital through the tunnel that runs under University Avenue with his dad by his side. As I sat in the delivery room, all I could do was cry.
Later that night, I was taken by wheelchair to Sick Kids to see William. There was a lot to take in. Only hours old, he already had multiple IVs and was on a drug called prostaglandin which allowed William to go nine days before needing his first open heart surgery. That was nine days of cuddles, nine days of learning to breastfeed with help from the relentless lactation consultants, nine days of bonding, nine days for doctors to get better images of his heart and develop a plan of attack and nine days without a long scar down his chest.
On Friday August 13th, 2010 William had his first open heart surgery (OHS). The surgery was to put a shunt in to get him to acceptable blood oxygen levels (about 85%). This would get him home to grow before undergoing full repair. A few days later, the night before we were to be discharged, William's blood oxygen levels dropped down to the 30s and he was put on oxygen. It was back to the operating room a few days later but this time for a less invasive catheter procedure where a stent was placed in the shunt. We were finally home a couple days later with daily injections of blood thinners and monthly blood work.
When William turned 5 months old he was back at Sick Kids for his full repair. This was the day we were waiting for and dreading at the same time. The surgery went well with his ASD and VSD being patched up with a Gore-Tex patch which also resolved his DORV and his pulmonary valve being by-passed with a conduit. Recovery on the other hand was a challenge. William had severe acid reflux, food aversion and a failure to thrive. This was one of the most difficult times of all. William fell behind on his gross/fine motor skills. He ended up being readmitted to Sick Kids and having an NG (nasogastric) tube inserted. This meant that for each feed, I would weigh William before and after breastfeeding him, top him up through the NG with fortified formula and hope that he would keep it down which he often did not.
Thankfully, after a few months, we were able to get the acid reflux under control and William finally made it back onto the growth charts at the 3rd percentile in weight. We worked on his gross and fine motor skills with occupational therapists at Sick Kids and in our community.
The next five years were quiet and completely uneventful from a cardiac perspective. However, at last summer's annual cardiac appointment, William's cardiologist told us that his conduit was narrowing. This was to be expected as we had been told that he would need follow-up surgeries to change the conduit as he grew.
In early October, William went to Sick Kids for a catheter procedure to stent the conduit. The hope was that the stent would open up the conduit, decreasing the pressures in his heart and buy him a few years before OHS. Unfortunately, they were unable to complete the procedure. The only option we were told was OHS to replace the conduit.
This surgery was described as 'difficult' and 'complex' by every doctor we spoke to. My husband and I were nervous and scared. William's surgery was scheduled for January 9th of this year.
William went in for surgery at about 8 AM and my husband and I waited in the surgical waiting room listening to Buddhist chants and playing Tetris to calm our nerves as best we could. Almost exactly 8 hours later his surgeon appeared and we got the news we were oh so wishing for "it went great". William's conduit was replaced this time with an adult vein and valve. What does this mean? As long as the conduit stays healthy, he won't need another replacement as he grows. The best news our family could receive.
William's recovery was also astonishing. Only three and a half days post-surgery, William was home! He was walking, playing and only taking Tylenol and Advil for pain. Spectacular!
We are truly grateful to Sick Kids. I am also very grateful to all the researchers who have spent countless hours finding ways to fix little hearts. Even drugs like prostaglandin were not available about 20 years ago. I hope that our story will compel others to fund the fight! Although over 98.5% of children survive cardiac surgery at Sick Kids, the impact that congenital heart defects have on these children is much broader.