So…I think I’ve mentioned before that I am a part of a “speaker’s bureau” of sorts comprised of parents of children with disabilities. A few weeks ago I was asked to tell my story as part of the annual training for new parents joining the group. Basically, from time to time the Family Resource Center is contacted by teachers, interns, and other organizations who desire the input of family members of children with disabilities – and that’s where we come in. We’re trained to tell our story and to advocate for our children, and by extension, all children and families affected by disabilities.
Anyhoo, I usually just tell my story off-the-cuff, but on this particular day I had 30-minutes to fill, so I sat down and wrote the story out. It was pretty good and I figured I’d publish it in small parts, along with some of the photos I use in the slideshow that plays behind me as I speak. I’ve written about a lot of this before, but this was the first time that I written about the early days of the diagnosis from a perspective that is not quite so “fragile.”
My name is Jennifer. I am 36 years old. I am married, my wife and I have been together for almost 13 years. We have two daughters. Our oldest, Grace, is four years old – she is our “evil genius” – she is very, very “typical”, she’s very bright, very social, extremely verbal, she’s obsessed with flavored chapstick and the Wonder Pets. She drives me crazy. She told me recently that she’d like for me to get another baby in my tummy so she can name it Beyonce. Most of the time when I am in support group, I think I am there more to cope with Grace than with Hope.
Hope is our youngest, she is two years old. When she was five days old she was clinically diagnosed with Prader-Willi Syndrome, a rare genetic disorder. Obviously, we are a fairly “non-traditional” family, both of our daughters were conceived through artificial insemination with the use of an anonymous sperm donor – the same donor, though I am pretty sure it’s Elton John because they are such drama queens. Anyway, they are full siblings – just to get that cleared up in case anyone is wondering.
I had what I thought, were two extremely uneventful and healthy pregnancies. Looking back now I can see that there were significant differences between the two, the main difference being less fetal movement during my pregnancy with Hope. But prior to my delivery, and even immediately afterward, there was nothing to suggest that there was anything unusual about my second pregnancy. I went into labor prematurely at 36 weeks, but even that didn’t seem to concern anyone – my first pregnancy ended at 38 weeks with Grace, so I just figured I was an early bird.
Hope weighed 5lbs even and scored 8’s and 10’s on her Apgars. She was whisked away for evaluation right after I delivered because she was premature. When she was finally returned to me, I guess I was kind of “forewarned” – she was very “sleepy”, and seemed to have no inclination to nurse. But the nurses said she’d grow out of it, that 36 weeks is right when babies are starting to develop the sucking instinct in utero and she probably just needed a few days. In fact there was another little girl in the nursery, also born at 36 weeks but a few days earlier than Hope who was in the same situation. By the second day Hope was being fed through an oral gastric tube and was being taken to the nursery every two hours for tube feedings. I was beginning 6 months of being attached to a breastpump. Over the next few days we watched Hope and this other little girl lay side by side during their feedings in the nursery, but we also watched the other little girl start to “wake up” more, start to suck, and quickly be transitioned to a bottle. But Hope didn’t change.
When I was discharged after three days without Hope I was devastated and I knew that something was wrong. Unfortunately, I thought it was something I had done. I remembered the first night alone in the hospital with her, I was holding her as I got into the hospital bed and her head slipped off my arm and snapped backward – her eyes opened for a second – the only time I remember seeing her eyes in the hospital – I thought that in that moment I had done something that had permanently damaged my child but I was afraid to say anything.
For the first few days, pediatrician on call for the day from our practice would come in and check on Hope and always said she was fine, she just needed a few days. By the fourth day, by the time we were home and Hope was not, we began to get a little “pushier” – and thankfully our doctor’s responded and began running a myriad of tests, ultrasounds, toxoplasmosis, you name it.
I have to add a little caveat here. You will hear absolutely nightmarish stories of insensitivity and incompetence from many families with children with disabilities about their doctor’s – particularly in those early days surrounding the initial diagnosis — and I do not mean in any way to diminish those experiences. But I feel kind of an obligation to say that in our case, we were truly blessed to have had exceptional care from the very beginning – if only to say “thank you” and to acknowledge that there are good, competent, and compassionate doctors out there.
The first doctor to start running tests said “sometimes it turns out we should have been looking when we weren’t,” but all her tests came back normal. The next doctor, the next day, did what turned out to be the “crucial” test. He flipped Hope over the palm of his hand, and she hung there like a wet noodle. She was severely hypotonic, she had no muscle tone. He didn’t say much. And believe me, we asked. My wife and I are both teachers. Tammy has been a science teacher for 20 years now. I was a social studies teacher before the girls were born, but believe me, I read everything I could get my hands on about pregnancy, childbirth, and infancy. We were asking hard questions, we were watching this doctor very closely. We insisted on a consult from the neonatologists next door – he agreed. The neonatologist said to call the geneticist.
So it’s Sunday now (Hope was born on Tuesday), and I’m at home while Tammy pulled her “shift” at the hospital. I’m hysterical. I’m still convinced that whatever is going on is the result of what I did that first night at the hospital and finally confess so to my mom. Even though, by this time, the geneticist has been called – it never occurred to me that anything was going to come of that. Tammy was supposed to come home at 5pm during the shift change at the hospital. I’m such a mess I don’t even notice as 6pm goes by, then 7. At some point my mom just “disappears” from my side for like a half an hour. Then I suddenly regained enough awareness to begin to wonder where in the hell Tammy was. Right then she walks in and she is just distraught. Up till then she had been totally cool and totally calm. Now she’s a wreck. My mom comes in after her – she’s been crying. And now my aunt, the nurse, walks in – looking serious. Tammy sits down and says, “the geneticist came in around five, she examined Hope, she asked some questions about the pregnancy, and she thinks that Hope has something called Prader-Willi Syndrome.”
Tammy couldn’t describe much of what the doctor had told her about Prader-Willi Syndrome because at this point she broke down, and I remember her saying something through her sobs about how kids were going to make fun of Hope at school, they were going to call her “fat” and “retarded”. I stopped Tammy at some point and just asked point blank, “is she going to die?”
“No,” she said.
So I said, “ok, let’s go,” and then we did what Americans living in the internet age do, we went to Wikipedia.
These are the words we read:
Failure to thrive
Poor physical coordination
Excessive weight gain
Average to low intelligence
Increased risk of autism
So I went back to the hospital while my mom and Tammy made all “the calls” to inform friends and family what was going on. I got to the hospital where my pastor was waiting for me, she had got the first call. We went in to the nursery, where they gave us a private room and I held Hope and sobbed. I sobbed because she had this thing that I didn’t even know existed until an hour before, I sobbed because I felt bad that I was crying in the first place – after all – with the exception of the probable Prader-Willi, she was perfectly healthy. I cried because I was afraid that if I cried too much, God would think I was ungrateful and then something worse would happen. I cried because it felt like my life was over, because the baby I thought I was having was gone, and because I was terrified of the life my new baby would have to live.
to be continued….