In Memory of Colin Brown, Rockland, MA March 26, 2001to March 30, 2006

We 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 walkthrough of 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 (DILV), 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 double inlet single left ventricle.

Colin had the Norwood surgery 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 drank 30ml of fluid. It is all about getting enough calories into him since his heart worked 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 arrhythmia issues. He has also had four catheterizations. There were possible plans in the future for a pacemaker but it was a wait and see thing.

Colin was funny, loving and extremely considerate of other people. He loved race cars, monster trucks and anything else his twin brother loved. We were always worried when he'd became ill. I know that we didn't know long his repairs would last but I tried not to think about it. We were lead to believe he'd have at least 30 years or so. Every time I saw that beautiful smile or his angelic sleeping face, I thanked God that He thought I was worthy enough to receive such a gift as my son, Colin. I have never met a more kinder child in my life and I had hoped that life would always treat him kindly. Colin and David traveled the country enjoying family and friends, packing in a life's worth of experiences into 6 years. They had been on planes more than 17 times and had been to all the fun things this country has to offer. He was the happiest child and always spread sunshine where ever he went. His last days where spent fulfilling his lifelong dream of being at the Monster Truck World Finals in Las Vegas on March 25, 2006 where he had an unexpected heart attack on his birthday and passed away 3 days later while on his trip.