Hello to anyone still reading my blog. This will be my last entry.
I am at 19 weeks pregnant with a little girl -- my secret hope come true, though I told everyone I just wanted "healthy." I got my girl, but she is not healthy. My quad screen blood test showed a 1-in-14 chance of neural tube defect. Unfortunately that result did not come back before we were in the office for a Level 2 ultrasound on Tuesday, so we were blindsided by the news that our little girl has spina bifida.
Spina bifida is a serious birth defect. She has a lesion or hole in her spine because something went wrong in her development at around 8-10 weeks. In her case, the hole is very low on her spine, which is relatively good news. It means she may have difficulty learning to walk and to control her bladder and bowels, but probably will not be paralysed or unable to breathe, which could have happened if the lesion had been higher up. Unfortunately, she has the worst form of spina bifida, myelomeningocele, which means a part of her spinal column and its fluid are protruding in a sort of hernia or sac through the lesion. A common complication that she already has is hydrocephalus, or "water on the brain," with a related complication called the Chiari II malformation in which the pressure of this fluid presses her brain down into the upper spinal area.
All of her problems can be treated with surgery after birth, but things could get much worse for her in the remaining weeks of pregnancy if the fluid pressure in her head continues to build. She may not be of normal intelligence or if she is, she may have learning disabilities. She will always be a "special needs" child, and if she lives she will face a lifetime of surgeries and the risk of many complications. There is no "cure" for spina bifida, only treatments for its symptoms.
I am told that, insofar as they know, my daughter's condition has nothing whatsoever to do with her being a donor baby, unless my donor was untruthful about having a history of spina bifida in her family. I heartily doubt that; I know my donor is a wonderful woman. I am also told that since I took my prenatal vitamins, her condition has not resulted from something I did wrong, like a lack of folic acid. It simply happens in some cases, and nobody knows why.
I thank all of you for your support through the donor process, as I move on to this next challenge.