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His story as of April 13th, 2006
In November 2004, Jack’s mother, Dione, and father, Bob, found out, through the first ultrasound, the news that the baby (who Dione was pregnant with [Jack]) had fatal problems with his heart. They attended two other meetings with doctors in London, Ontario, but the news had not changed. They were told they had to decide whether to terminate the pregnancy, or wait till Jack was born, and he would die a short time later. The doctors were not comfortable giving that news, so they wanted to send Dione to Sick Kids Hospital in Toronto to see a heart specialist there.
When in Toronto at the third meeting, they received technical news that Jack had hypoplastic left heart syndrome. The options given at that point were a lot more hopeful. A heart transplant was one option, and a series of operations – the “Norwood”, the “Glenn” and the “Fontan” – was a second option, and the third option they touched on, but that was not an option for Jack’s parents, was termination of the pregnancy. The hospital said they would support any of those decisions. A lot of information was given to Bob and Dione at that time, but thankfully they didn’t have to act on it until Jack was born.
While in utero (mother’s womb) a fetus only needs the right side of the heart to pump the blood to the body. It is when the baby is born, that it became a medical emergency.
After a long thought process, Bob and Dione moved their family to Toronto at the beginning of March 2005. That move was so that Jack could be put on the early transplant list. The hospital wanted them that close so they were close in case the heart became available. If a heart became available prior to his birth, they would induce labour. If the birth wasn’t quick enough, they would perform a C-Section.
On April 1st, 2005, Jack Hildenbrand was born at Mount Sinai Hospital, Toronto, Ontario, without intervention on his due date. The medication worked that needed to keep the valve open in his heart. After birth, a valve in the heart closes off and the left side of the heart pumps the blood to the lungs and the right side to the rest of the body. Jack had to remain in hospital on this medication until the heart became available. He got really sick once, and Bob and Dione thought they were going to lose him. The doctors corrected the medication problem; Jack got better, and they continued to wait.
At 4:30 a.m., Bob and Dione got the call that there was a possible donor match. That day was a very long day, but went by quickly enough because of the support that Bob and Dione had from the other families and staff at the hospital. The heart arrived in hospital at 6 p.m. that evening, and by 10:30 p.m. Jack was in recovery. The team of doctors was very happy with how the operation went, and they were hopeful that Jack would continue to do well.
One week later the doctors approached Bob and Dione and advised them that Jack was ready to leave the hospital. They were shocked that it was so soon, because they had been given news previously that Jack would be in hospital for approximately three months, and then they’d have to stay in Toronto for another three months. Jack and his parents lived in Toronto until the beginning of June, at which point they were allowed to take Jack home. That’s the “Coles Notes” version of Jack’s journey in Toronto.
The doctors continue to see Jack, and are very pleased with his progress. They said that a lot of cases don’t go as well as Jack’s had, but they were obviously pleased nonetheless. Since back home near London, Jack had three biopsies, and all continues to be well. His first birthday is coming up, and the family is looking forward to that.
On April 1st, 2006, Jack turned “1”, and had a great little birthday party. He was covered in chocolate cake like every one-year-old should be. It was a very special day, obviously, and a lot of the people who had been there for the family, during the wait for Jack’s heart, were able to make it. It continues to seem like a dream for Bob and Dione, and they can’t really believe all that’s gone on over the past year. The family wants to thank everyone who was there, and continues to be there for them during this never-ending journey.
Jack has two sisters: Abby (4 years old), Grace (3 years old).