Mosaic Trisomy 16
Here [above right] is a picture taken of Sean at 7 months (he weighs almost 11 pounds).
I just want to reiterate that Sean's heart problems are really his only problem (the hernia was just a preemie thing). The other stuff is so minor and I only mention it so we can keep an accurate track of everything. Other than being small, Sean looks completely normal. In fact, almost every doctor has commented on what a handsome boy he is.
The other thing that strikes me is just how many people on the web site talk about what a happy, outgoing child they have. That really counts for a lot.
My big advice to all expecting parents is to hope for the best but be prepared and take care of yourselves. You might have a child in the NICU for a while. Know the hospitals in your area with a level III NICU and, especially if you have other children, have some help available when the baby is born. It's a stressful time, but you'll have great people taking care of your kids - I got lots of tips and advice from the nurses. And, like Karen said, a lot of it fades away after a while (I said I'd never have another kid after my first childbirth experience b/c it was so painful).
Update August 2014
Sean is now 10 years old and, in almost all
respects, living the life of a normal 5th grade boy. He’s moving up the
growth charts– 40th percentile in height and 25th in weight. He is a
good eater but he is also very energetic, so he burns a lot of calories.
He really likes school and is doing well academically. When he's not
playing some sport or running around in general, he enjoys reading and
playing video games. Given his early months of physical therapy, it’s
great to see him become such a good athlete. His pacemaker limits him
from playing some of the more intensive contact sports, but he loves
skiing, diving and playing baseball, ping-pong, tennis and squash. On
the musical side he has been playing piano for several years and he is
going to try the drums this year in school. He wears glasses – got them
about a year ago, which is not surprising since everyone else in our
family wears them. He’s a very happy and social boy. Other than those
who meet him at the pool (where they can see the scar from his heart
surgery), no one has any idea that he has mt16, and even then, the
discussion is about the heart condition, which is the only current
"symptom" of the chromosomal disorder.