1st e-mail Sent September 3rd
Some of you may know, some of you may not know, and I am sorry this is long winded. I also apologize if this is a surprise to any of you, but I just wanted to let you all know that Whitney Elizabeth Byron was born August 25th at 1:04 a.m. Laura literally almost had her in the car. She was dilated to a full 10 plus 1 when we arrived at the hospital. It was like a scene from a movie getting to the hospital as I drove 70 mph down 131st to Carmel St. V’s. just after midnight Sunday night/Monday a.m.
You’re probably going to hear this from someone, but just so you know the latest and so you hear it from me, Whitney has down syndrome. This has been confirmed. As you can imagine, it was quite a shock to find this out, as we had absolutely no idea, hint or indication that this would surface. Our 20 week ultrasound showed no signs of any problems, and Laura’s pregnancy was just fine the entire time. Apparently, they are only able to detect down syndrome from an ultrasound about 50% of the time. Truthfully, even if we had known of her condition at that time, it wouldn’t have changed anything. Also for us, we would have rather been shocked for 2 days, which we were, than have a pregnancy wracked with constant worries and fears.
After Whitney’s stay in the neonatal intensive care unit, we all went home Friday afternoon after a 5 day stay and Laura and Whitney are doing very well. Big sister Anne is beaming with pride and is happy to have a future playmate. She can’t keep her hands off of her. Constantly kissing, hugging and patting her face. It’s very cute. A little maddening at times, but cute.
The severity of Whitney’s down syndrome and her overall mental capability is not known and will not be known until later in her development. However, we went to the pediatrician yesterday and we were told that she is currently ahead of most down syndrome children as she is not weak, she feeds very well, she has put on weight, etc. But, Whitney does have a heart defect. It is specifically termed a “complete atrioventricular canal defect” or “A-V canal defect.” Virtually 50% of all down syndrome children have similar heart conditions. Whitney will be having open heart surgery in about 4 months to correct this defect. Without the surgery, her life expectancy would be 15-20 years and would be filled with a variety of complications. After this surgery she should have a heart that functions normally at about 85% - 95%, and have a full life expectancy.
We are very lucky to live in a day and age where there are so many resources, specialists and groups that are here to help. Despite Whitney’s initial setback and diagnosis we are very fortunate.
I am sorry if Laura and I have not returned phone calls and e-mails from some of you. As you can probably guess, we have been VERY busy. I promise to get pictures out sometime soon after I dig myself out of my e-mail / voice mail backlog. Until then, please feel free to call, e-mail or ask any questions that may come to mind. We’re not walking on egg shells about this. It is what it is. We will simply take it one day at a time. I would have e-mailed you all the news had she been born without any problems, so why would I change that now. We will all be just fine.
Love,
Mike, Laura, Anne and Whitney
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