Colin Samuel Brown's Story... 2001-2006

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 a 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 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 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 few times in his

first year due to dehydration and RSV. At six months of age he had the

Bi-Directional 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 had arrhythmia issues. He also had four catheterizations along with a Fenestrated closure device inserted in his heart. 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 understood that after these repairs these children are expected to live at least 30 years or more. 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 a 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.