Clara, the baby, the blessing, the doll, the miracle, is all those things and more...oh, so much more. So I don't want this post to come across as me wanting her to be someone other than she is. Clara, was born with Spina Bifida, a birth defect that causes an incomplete closure of the spine during in utero development and in turn leaves individuals with varying degrees of disabilities.
Of the disabilities, most obvious, but probably least important (my opinion) is gross motor skills affecting areas of the body typically lower than the defect of the spine. Children with Spina Bifida can also have bowel and bladder issues, that can cause severe kidney disease and renal failure if not treated appropriately with cathing, medicines to relax the bladder and potential surgeries. They are all (nearly all) born with a brain malformation called Arnold Chiari Malformation II (ACM II). This malformation can cause fluid that bathes the brain and spinal chord to not flow appropriately between the two areas. The fluid will build up on the brain causing Hydrocephalus. Hydro is treated with a tube that runs from the ventricles in the brain to the peritoneal cavity of the abdomen commonly called a VP Shunt. The malformation can also cause some other more severe issues that I won't touch on here because I am not fully informed due to Clara not having to deal with them.
This is where I really start...Clara does have a VP Shunt. Shunts are amazing. They drain the fluid from the brain which enables normal brain development and prevents mental delays caused by pressure from excess fluid. Shunts are miserable because they can and often do...fail. This is where we found ourselves on February 10, 2011. It had been determined that Clara's shunt was not functioning properly and needed to be replaced. Her first one had lasted over a year, but we still found ourselves where many SB parents have found themselves many times before.
When we first got our diagnosis that Clara would be born with Spina Bifida. Everyone would ask "Well what can you do?". I knew that there was a surgery that could be done while you were pregnant, to close the baby's defect theoretically stopping amniotic fluid from continuing to damage the exposed spinal nerves. These surgeries started being performed in the US in 1994. In 2003, the National Institute of Child Health and Human Development, a part of The National Institutes of Health initiated a study called MOMS (http://www.spinabifidamoms.com/english/index.html). An amazing, but now heartbreaking study. Due to the NICHHD study the prenatal surgery went from being a choice we could make, to having to qualify and then get randomized and then move for months to a study site. We did not qualify to participate in the study. Clara, would have to wait until she made her grand entrance to have her necessary surgery. Still with well intentioned questions from friends and family, "Well, I have done some research and did you know there is a surgery you can have now..." with my scripted response, "Yes, but we can't choose to have it and we did not qualify for the study."
On February 10th 2011, in a "blizzard" in Nashville, early in the morning...Clara, taken from my arms, was wheeled back to surgery to have her failing shunt replaced. On the very same day, the New York Times front page, ABOVE the fold posted this
It was determined that the surgery is indeed a success and one of the most notable successes was the reduced chance for a shunt (in turn, shunt failures)...Ironic.
As parents, we did what we could. Who knows of the potential problems a surgery like that would have/could have caused... The roadblocks, speed bumps were there for a reason. I adore Clara. Clara is who God wanted her to be. And I truly believe that.
