This morning dh and I traveled to Nahariya to meet with a genetic specialist to get results of testing that was done when the baby was in the hospital. After 2.5 weeks, we finally have some definite answers!
When our baby was about three hours old, a doctor told dh that he had some features that are common to babies with Trisomy 21 ( also known as Down syndrome), but, she added, sometimes within a few hours these features change. When dh told me that, I paused for about half a minute to think about that, and then said, “That doesn’t make any sense. How can features change, and what features is she talking about?”
Dh didn’t know, and when I saw the doctor for the first time an hour or so later, after she finished telling us about all the medical issues the baby was facing I asked her what features she was commenting on. After she told me, I said, “You’re pretty sure it’s Down syndrome, aren’t you?” “Yes”, she nodded, as she looked back at me worriedly. Okay, I thought to myself, so that’s it.
I took the baby for a nursing session and told dh what she said. We both felt that Hashem (G-d) was giving us a vote of confidence, as if to say, “You’ve dealt with all the challenges I’ve sent you so well that now I know you can be trusted to raise this special gift.” It’s hard for me to describe this without sounding woo-woo, but I had a sense of Hashem shining a loving light all over dh and me and our baby.
The next morning, a nurse came in to ask me how I was doing and talk to me; she was sent because they want to be emotionally supportive of parents who are getting news like this. It turns out she was an English speaker and I enjoyed chatting with her. She told me what an amazing attitude I have, and that she’s not worried about me emotionally – she even told me that I’m going to add a lot to the support community for DS here in Israel! (I thought that was highly optimistic of her being that after the first night in the hospital I was seriously sleep deprived.)
After her a social worker came in to talk to me, and within just a minute or two of meeting me said, “I don’t know why, but I have a sense that you’ve already accepted this and feel peace about the situation.” And I told her she was right, and then shared with her my thoughts that our newest baby was purely a blessing and nothing else. Our baby is our baby and he is precious to us no matter what; hearing about the likelihood of Down syndrome didn’t change our feelings toward him at all (except to make us feel even more loving and protective of him).
Later on I would speak with doctors, mostly neonatologoists – though at one meeting I met with the head neonatologist, the pediatric hematologist, and the geneticist all at once. (Having these medical conversations in Hebrew was definitely a linguistic stretch!) Each of them told me all the specifics about the baby’s situation that they were each responsible for; the geneticist was last. And she said to me, “I don’t know how – is it faith? – but you seem very accepting about this.” But we still didn’t have a firm diagnosis, and until the testing was done, we didn’t discuss the possibility of T21 with any but a very few close friends.
Unfortunately, the first testing results failed and had to be done from the beginning, which meant that we didn’t get a diagnosis until today. Waiting was really the hardest thing about this situation, since our inclination was to be open with whoever we spoke to about the baby and we couldn’t do that.
Dh and I left the house at 5:40 am to make our bus connections to get to our 8 am appointment at the genetic institute – they won’t give results over the phone – and it was oddly anticlimactic once we got there. Basically the geneticist said, “Just as you already thought, it’s Down syndrome.” Then she showed us a picture of the typical chromosome arrangement, then a chart that showed the T21 chromosome arrangement, then asked if we had any questions. (I thought to myself, “This is what I woke up at 4 am for???) When scheduling appointments they leave time for counseling the parents but we really didn’t need any help in coming to terms with this, so that’s why our appointment was so brief!
We had to see the pediatric hematologist while there, as well as the social worker, and dh commented when we finally left the hospital that it seemed as if all the staff we encountered was expecting to catch us emotionally as we fell apart -they all had furrowed brows and concerned looks as they asked us what we had heard from genetics that morning, and then asked us how we were doing when we told them the results showed T21. (I told him that’s how it was the entire time I was at the hospital -he wasn’t there after the first night.)
I’m really glad to have the official diagnosis and no longer have ambiguity about what we’re dealing with. Not only that, today we got the go ahead from the hematologist for the bris, which will take place on Sunday afternoon. We feel so blessed with all the good that is overflowing in our lives!
Avivah
