RETURN TO MEET KIDS WITH HEART
My husband and I weren’t trying to have children so on October 3, 2006 when we found out we were going to be parents, we were surprised but elated! We couldn’t wait to hear the heart beat and were even more excited on January 23, 2007 when we went for an ultrasound, we were going to actually be able to see our baby and find out if it was a boy or a girl.
The appointment seemed long but I hadn’t done this before so didn’t think much of it. We were told we were going to be having a boy!! We were thrilled, his name was going to be JACK. My husband and I both had to go back to work after the appointment so we went joyously along our way telling everyone we were going to be the proud parents of a baby boy at the end of May!
Less than 10 hours later the rug got pulled from underneath us by a phone call stating something was wrong with our son’s heart. From what our family doctor was saying JACK’s heart was not developing correctly, he had HLHS - Hypoplastic Left Heart Syndrome (Single Ventricle Defect). We came to find out that what it meant was that our baby was going to have to have 3 open heart surgeries all before the age of 5, he was going to have physical limitations because his circulation would be different and that his future is unknown. Babies born with this heart condition used to be referred to as “Blue Babies”. The first surgery to try to repair this heart condition was performed in 1986.
On May 28, 2007 our beautiful baby boy was born - JACK, 6lbs 6oz and 19inches. He was (and still is) so very beautiful. We were lucky enough to hold him briefly before he had to be taken to NICU to be stabilized. JACK was 10 days old before his first open heart surgery, the Norwood. That day was so painful it was almost crippling. We were in the hospital until July 17, 2007.
We enjoyed being home until October 3rd when JACK had his second surgery, the Glenn, I would be lying if I said it was any less painful for my husband and I than the first. JACK had some post op complications after the second surgery with excess drainage so that same night he was rushed back into surgery to check for leaks. A large blood clot was found and removed. We were able to take him home after a week.
JACK’s third surgery, the Fontan, was July 30, 2009. Unfortunately, the surgery did not provide the optimal results we had hoped for. JACK’s oxygen levels remained low and the pressures in his lungs were high, there was talk of reversing the surgery. Luckily they did not have to do that. Instead, they did a cardiac cath and placed a stent in his left pulmonary artery which helped reduce lung pressure and increase oxygen levels to an acceptable level and we were able to go home on August 13, 2009.
During follow up cardiology appointments we were noticing that once again JACK’s oxygen levels were trending downward. At our visit in April 2010 JACK’s cardiologist started JACK on a drug called Sildenafil (aka Viagra) to help with these pressures. JACK’s cardiologist had just come from a conference in which they were talking bout the benefits of this drug in older heart patients and the possibility of trying it in kids with HLHS post Fontan. We are happy to report that it seems to be working and JACK’s oxygen levels are hanging steadily around 90-92% which is the best they have ever been! HLHS is not a condition that can be “fixed” rather, these surgeries allow JACK’s heart to work the best it can and work to prolong his life.
JACK wakes up every morning with a smile on his face and fills our days with love, laughter and overwhelming joy. He is our superstar! This experience has reminded us of how very precious life is, what a miracle life is and how fragile. Every night when we say our prayers we thank God for another day and ask him to bless us again with a tomorrow. We are much better people because of JACK and we thank God for him every minute of every day.
We don’t know what the future holds for JACK or us as a family but we do know the world, especially our world is better because he is in it.
Jack's Family – Cort, Stephanie and JACK!
RETURN TO KIDS WITH HEART HOME PAGE