So many wonderful families here already! Let’s see if I can give you the concise version of our story so far. (Warning – I’m not good a short versions.)
I have four children in total. Two of them are adults, one (19) still at home and with some learning disability issues of her own. Just about three years ago now, my husband and I welcomed a little boy into our family. It was a crazy, delightful and unexpected thing. And, once we got past the bleary eyed newborn stage, we began discussing the idea of a sibling for our little man cub. We didn’t have to wait all that long. About a year and half in, we were expecting again. We were thrilled.
And then, we had an “un-diagnosis” day. We were planning a home birth. We were healthy. We had no reason to anticipate problems, but my midwife offered to set us up for an early dating ultrasound (which went fine) and the 20 week ultrasound. We went, like a lot of folks, to that 20 week visit just excited to see our baby. You know how this goes. Tech gets very quiet. Leaves the room for a long while etc. The difference for us is that we were not patients of the doctor whose office this was. He just was helping our midwife. So we sat there, with a doc we had never met and were told … almost nothing. Abnormalities with baby’s brain. Might not be compatible with life. Don’t know much else, but will refer you. That’s all we got. That and a two week wait to see the perinatologist.
By the time we made that referral appointment, I had been reading excessively. I forced myself to wade through volumes of (often horrible – not recommended) info online about what sort of abnormalities could be found on a baby’s brain at a 20 week ultrasound. The possibilities, and there are several, were each one more devastating and more surreal than the last. When we were finally at our appointment, sequestered with the ultrasound tech and she said “Spina Bifida”, I was relived. Relived. I know that isn’t everyone’s take, but there are so many, far more terrible possibilities. Spina Bifida was treatable, survivable. It was knowable. It was OK.
We had very knowledgeable, forthright doctors. We had good care. No one pushed us toward termination. It was a very uneventful pregnancy. And in my third trimester, dissatisfied with the one and only option for a neurosurgeon in town, we reached out to Children’s Hospital Boston and the infamous Dr. Warf. At 36 weeks pregnant we drove three days, with our toddler in tow, to Boston for evaluations. We stayed to deliver and our precious girl underwent the ETV/CPC in the hands of Dr. Warf when she was 17 days old. In all we were there for 7 weeks, through Thanksgiving and Christmas. Holidays I will never forget, and which will now never be the same.
Now, almost exactly a year later, she has been determined to be stable and perhaps even slightly improved from Dr. Warf’s perspective and we’ve been released from his care. She has some mild gross motor delays. She does not yet crawl or pull up, but she’s working on it. She can stand and loves to do it. All her other milestones were met right on time and without issue. She is bright, happy and incredibly social. She is a delight and a joy. People seek me out from across parking lots and store isles to be able to talk to her and tell me how irresistible she is.
It’s true!! She’s completely irresistible. There are doubtless more challenges ahead. Such is life. There are many more things I could write here, but the sum of it is this. So often they refer to SB children as being, or having, an adverse outcome…
I say, she is the best possible outcome.