Archives for 2012

When Brooklyn was born, she had clubfeet, a common complication associated with Spina Bifida. Her legs, knees, and feet were not in the proper position, which made it difficult to change her diaper and to hold her comfortably, but it never seemed to bother her at all.

At the time, we lovingly called her “Twisty, Twisty,” but I’ll admit, this was probably one of the most confusing parts of our journey. We, of course, loved her no matter what her legs or feet looked like, but I didn’t know the “right way” to handle it all. If I hid her feet, I felt like I was acting ashamed, but if I let them show, I felt like I was flaunting them and asking for attention. Plus, there was so much more to my baby than her twisty legs. I wanted people to see past them — but, honestly, I wasn’t quite convinced they could.

Extensive casting, molds, braces, therapy, and a few surgeries have helped correct the position of her feet and legs, but this continues to be  — and most likely always will be — a challenge for our rock star. However, what we have done so far has gotten her lower body ready for our ultimate goals — standing and walking.

Based on muscle tests and Brooklyn’s abilities, we don’t think she has any feeling below her knees, and she is showing no signs of gluteal muscles. This means she is unable to stand independently, which has made walking more difficult than we had hoped. It also means she can’t feel me tickling her tiny feet, and she has no idea when she gets a scrape on her leg.

None of this, however, has stopped Brooklyn from getting where she needs to go. Sister is making it work. She gets into cabinets, unrolls toilet paper, and (as some of you may remember) loves doing gymnastics. Her current favorite activity is pulling herself on and off her therapy bench. (Little does she know what great exercise this is for her!)

I swear, Miss Brooklyn sees no obstacles. She just sees opportunity — a trait that will no doubt take her anywhere she wants to go.

Here is our Brooklyn, not even 24 hours old yet, recovering from her first major surgery.

Brooklyn has myelomeningocele, the most severe (and common) form of Spina Bifida. Basically, while she was forming in my womb, her spinal cord did not close properly, causing nerves to be exposed and an irregular flow of cerebrospinal spinal fluid. That means part of her spinal cord was literally sticking out of her back, causing nerve damage and permanent paralysis.

When Brooklyn was born, she had to be wrapped in plastic and could not be held. She also had to be immediately transported to a children’s hospital to have surgery to close the opening in her back. I was able to see her for five minutes — just enough time to hold her little hand — before the nurses rolled her away to the ambulance. I wouldn’t see her again for two very long days.

Myelomeningocele may affect as many as 1 out of every 800 infants. The levels of nerve damage and complications vary by individual and can take time to identify, which makes waiting a very big part of Spina Bifida.

The causes of MM and other forms of Spina Bifida are unknown, but they have found that prenatal vitamins with folic acid can decrease the chances of occurrence. The tricky part is that it happens very early in pregnancy, typically before a mother even knows she is pregnant.

If you want to read more about Spina Bifida, you can go here. I also wrote this blog post shortly after we found out about Brooklyn’s diagnosis. I promise you there is much more to the story than a bunch of facts and statistics, but I wanted to start here, with the basics.

Because of the compassion of a nurse, I was able to hold Brooklyn the day we were reunited. Yes, there was a foam layer between us, but in that moment, I realized just how very precious life is. Every life. 

I realized how thankful I was just to have her. Nothing — I mean nothing — else mattered.