ColinWe gave Colin his name when I was 25 weeks pregnant because it means victorious. I learned of his CHD when I was 20 weeks pregnant. All birthing plans changed - different doctors and hospital for me and my babies. I am glad that I had the knowledge ahead of time to prepare myself and my family for the upcoming experience.
We did the walk through the CICU at Boston Children's Hospital and met with all the doctors to get our heads wrapped around the whole thing. As if one could comprehend a three day old baby having his first open heart surgery. The idea of the doctors working on a heart the size of my baby's fist was so scary.
Colin and his twin brother, David, were born in March of 2001 via c-section and my life has never been the same since. Colin was born with double inlet single left ventricle, small subaortic outflow chamber, restrictive bulboventricular foramen, bicuspid aortic valve, severe aortic coarctation, severe transverse arch hypoplasia and a patent ductus arteriosus. How can one little baby have so many heart defects? It's easier to tell others that his diagnosis is single left ventricle.
Colin had the Norwood when he was three days old. He was in CICU for 10 days, mostly on sleep drugs to keep him still. When he was 17 days old, I was able to bring him home after he successfully ate 30ml of fluid. It is all about getting enough calories into him since his heart works overtime and burns a lot of calories.
He thrived along side his brother and days seemed to pass. I'd worry when they'd become sick as I was concerned that Colin might wind up in the hospital just with a common flu. He was in the hospital four times in his first year due to dehydration and RSV. At six months of age he had the Bidirectional Glenn and did wonderfully and was home in five days! At 18 months, he had his third and final planned open heart surgery, the fenestrated Fontan. After this surgery, he has had arrythmia issues. He has also had four catherizations.
Colin is funny, loving and extremely considerate of other people. He loves race cars, monster trucks and anything else his twin brother loves. We will always worry when he's ill. I know that we don't know long his repair will last but I try not to think about it. Every time I see that beautiful smile or his angelic sleeping face, I thank God that He thought I was worthy enough to receive such a gift as my son, Colin. I have never met a kinder child in my life and I hope that life will treat him kindly.
Story by Colin's mother, Valerie - Massachusetts
UPDATE: In March of 2006, Colin and his family went on his Make-A-Wish trip to the Monster Jam World Finals in Las Vegas. Sadly, with reasons unknown, Colin passed away (3/26/06) while on his trip. Many hearts have been broken with this news of this sweet little boy. He has touched so many hearts and will be missed by many.