Walking across the covered second story walkway from the parking garage I stared straight ahead at the two sets of double doors. I dreaded walking through them. Being at a children's hospital was certainly not a place anyone ever wanted to find themselves.
The day is rainy and overcast. I comment that we've always gotten bad news on beautiful sunny days, so maybe our luck will change. I have never minded the rain, and in fact had slept very peacefully earlier this morning with the bedroom windows open and the rain beating down on the awning outside. I absolutely love sleeping in the rain, and hope Annabel finds it as calming as do I.
Some parents carried babies inside, while others held onto the hands of older children. I tried to guess what was wrong with each child that walked past.
We made our way to the fifth floor cardiac wing and stepped inside. It was surprisingly small, sparsely decorated, and quite honestly dreary. Nowhere in sight were the colorful and cheerful decorations and architectural elements we had seen throughout our journey upstairs. I was disappointed. Did cardiac patients not warrant "pretty"?
A large black woman sat at a desk in the middle of two waiting rooms. I signed in via computer and we took a seat. A few minutes later she called me up to the desk, her tone that of someone who was bored and weary of their job. I filled out a registration form, surprised at the short length of it, then took a seat and waited to be called.
A little girl of around 1 was waiting with her daddy. What would have normally been porcelain baby skin was tinted yellow. Jaundice. But she was happy and smiling, pushing a tiny chair from the children's play area around like a walker. It was evident she was very proud of her accomplishment. Her blonde curls bounced as she walked bow-legged across the room, smiling at everyone who looked her way.
I pictured Annabel doing the same thing and wondered what she will look like, at what age she will be pushing a chair around as she learns to walk. I assume it will be later since children with Down syndrome tend to reach milestones later than non-Ds children. This doesn't bother me, as I am well-aware that there will be delays and that all children, Ds or not, do things in their own time. But nonetheless, I wonder.
My name is called and we - Russell, my mother and I - make our way back to an exam room. The first part of my fetal echo cardiogram will be performed by a fellow, as Vanderbilt is a teaching hospital. Dr J. is a pretty petite blonde with a kind and cheerful smile. I immediately feel at ease with her.
Annabel is once again active, and once again completely uncooperative. Dr. J. has a continuous excellent view of her spine, which is not exactly helpful, but she is able to get some images of the heart. After over an hour of this I am sore and need a bathroom break. She tells she's going to be my cardiologist, Dr. K., who will try to get better images and will then explain to us what she sees.
An hour after that we sit in a room across the hall as Dr. K. explains to us her diagnosis: Atrioventricular Septal Defect (AVSD), which basically means, "Antrioventricular septal defects is characterized by a deficiency of the atrioventricular septum of the heart. They account for about 5 percent of all congenital heart disease, and are most common in infants with Down syndrome. (About 15 percent to 20 percent of newborns with Down syndrome have an atrioventricular septal defects). Forty-five percent of children with Down syndrome have congenital heart disease. Of these, 35–40% have AV septal defects."
She went on to draw diagrams and explain what exactly this meant. In a nutshell: Annabel's AVSD is "balanced" (no leakage), and should everything continue as is, she will not go into heart failure and should be okay at birth, although she will absolutely require surgery to repair it at 4 or 5 months of age, once her body is large and strong enough to tolerate such a complicated procedure. The thought is terrifying, but at least we have a diagnosis, and the prognosis is usually good.
She goes on to assure me that there was nothing I did to cause it, nor anything I could have done differently to prevent it. Annabel will require frequent check-ups for a while, and then a lifetime of yearly checkups should everything go well. She will be Annabel's cardiologist from here on out, and I feel very secure with that. I like her very well and she really seems to know her stuff, as well as being kind and patient.
She tells us that Vanderbilt has an entire program dedicated to children with Down syndrome, and explains that medicine has come a long way in treating the symptoms of Ds, and therefore life expectancy is higher now (almost that of a non-Ds individual) and quality of life is pretty much like anyone else's.
I have found that my worry about the Down syndrome has been overshadowed by the heart condition, so much so that the Ds no longer bothered me. For a while I even pretended the Ds didn't really exist. But now, facing both of them at the same time, I feel a bit more sorrow. I worry about what Annabel's future will be and how we will help her overcome her challenges. But for now all I can do is be thankful that things aren't worse, because no matter how bad you think things are, there is always someone else going through something much worse. I decide to count my blessings and hope and pray for the best. For the present, that's all I can do.
We leave with an appointment for a follow-up in 6 weeks, and a regained sense of hope.
My mom brought a few things with her - one, a photo of her when she was pregnant with me, and the other, the invitation to my own baby shower 43 years ago.
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| Mommy and me :-) |
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