My name is Valerie Brown and I have a 4 year old son, Colin, a twin, who was born with several congenital heart defects - double inlet single left ventricle, small subaortic outflow chamber, restrictive bulboventricular foramen, bicuspid aortic valve, severe aortic coarctation, severe transverse arch hypoplasia and patent ductus arteriosus. Can one little thing have so many heart issues? But, usually I just say single left ventricle. I learned of his congenital heart defects when I was 20 weeks pregnant, with Children's Hospital Boston confirming the diagnoses. All birthing plans changed - new doctors for me, doctors for my baby and a new hospital.
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 of the Cardiac Intensive Care Unit and met with all the doctors when I was 25 weeks pregnant and started to get our heads wrapped around the whole thing. As if one could comprehend a 3-day-old baby having his first open heart surgery (of which we knew there would be 3, maybe, if the heart was okay when they went in the first time)! They don't know what to expect and the doctors don't tell you everything at the time either. For example, Colin might have needed a heart transplant - it is a time for not knowing and just waiting to see. A baby's heart is the size of a fist and the idea of the doctors working on something so small is scary.
Colin and his twin brother David were born in March 2001 via C-section and my life hasn't been the same since. Colin had the Norwood operation at 3 days old. They don't stitch up the chest right away; they wait until the swelling of the heart goes down. By day 5 he was doing well and was stitched up. He was in the CICU for 10 days, mostly on sleeping drugs to keep him still. I was able to bring him home after he successfully ate 30 mL of fluid on day 17. It is all about getting enough calories into the kids because their hearts are working overtime, and it burns a lot of calories.
He thrived alongside his brother and the days seemed to pass. You'd worry when they'd become sick, as it can throw a heart baby right into the hospital with just the common flu. The first year he was in the hospital about four times due to dehydration and RSV.
At 6 months he had the bi-directional Glenn surgery and was in the hospital for only 5 days - he did wonderfully! At 1½ years he had his third and final open heart surgery, the fenestrated Fontan. He has had other surgeries via catheterizations, about four for different reasons. After the fenestrated Fontan, he had arrhythmia issues, which is very common from the final surgery.
We will always worry when he's ill, but you can't change being a child. Children are going to get sick and there is nothing you can do to change it unless you put them in a bubble and that is not what being a child is all about. You need to treat them as normally as possible and let them know they are normal, regular children, not set apart from other children, and let them know that they can do anything they want. It is hard not to try to treat your heart child more delicately but it is not helpful in the end. All children want to be loved and to fit in with other children.
Colin is funny, loving, and extremely considerate of other people. I've never met a kinder child in my life and I hope that life will treat him kindly.
— Mother to Colin and David