Meet Jack

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I write this in October, Spina Bifida Awareness month. I became personally

aware of Spina Bifida on December 15, 2013 at my 20-week ultrasound. I could

immediately tell something was off when the ultrasound tech did not send me

back to my OB's office with my results in hand as they had done with my first

pregnancy. As I waited for an eternity in that office with my husband, I had a

million scenarios running through my head. When the doctor came in, so

serious, no small talk -- what I heard was: Our baby's spine did not close

properly, and the spinal cord was exposed. He had fluid on his brain, and he

had a banana and lemon shaped brain that was being pulled down into the

spinal column. They said our baby probably would not make it full term, but if he did, he would be paralyzed, have extreme brain damage, and most likely would not survive. It was a most extreme case of myelomeningocele ("Milo-my ninja-seal" is how I later learned to pronounce it). We were in shock. We did not even have any questions. We were led out a back door and told that we would meet with a Maternal Fetal Medicine doctor a week later for an in-depth ultrasound and to answer our

questions.

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That second appointment, a week later, was the worst. I had been Googling the diagnosis for a week. Finally, our diagnosis was confirmed. We were given the options: termination (out of state as we were passed 20 weeks) or a very grim outlook if we chose to continue our pregnancy. Either our child would be a vegetable if he survived, or he could be given palliative care until he passed. I asked about fetal surgery or a specialist and was told I was not a candidate but that the baby would probably need to be delivered at Vanderbilt because of their NICU, but there was no need to talk with them until closer to delivery.

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Whaaaat???? I sat in my house and cried for two weeks and finally picked up the phone myself and called Vanderbilt. They said to come in for testing ASAP because fetal surgery may be possible, but we needed to move quickly. Ultimately, I was not a candidate for fetal surgery due to placental placement, but I was given HOPE! I was told about positive outcomes for post-natal surgery. I as told about varying degrees of nerve damage and how unpredictable it is, and how Spina Bifida is a snowflake condition -- no two cases are exactly alike. AND, I was told about HIGH HOPES!

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If you ever hear of someone who receives this news while pregnant, please tell them to consult with a pediatric neurosurgeon, not just with their OB/GYN or MFM. The neurosurgeons are the ones who operate on and follow these Spina Bifida patients their whole lives. They can give so much more insight to newly diagnosed parents.

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Jack was born early at 36 weeks (surprise!). He had surgery to close his back when he was 24 hours old -- normally a seven hour surgery, but it took only four! Everything went better than expected. The neurosurgeon did his part then plastics was able to perform a more simple closure than expected. We stayed in THE NICU for 19 days watching Jack's hydrocephalus (fluid on the brain) to see if intervention was necessary. Finally, on day 20, it was determined to try a brain surgery to relieve the pressure. The procedure we chose was called ETV-CPC. The surgery did not offer as high a success rate as a shunt, but it gave us hope that if it did work, he wouldn't be shunt-dependent for life. The EVT did help but not enough. Jack's head just kept on growing. Ultimately, Jack did require a shunt at nine weeks old. We have been lucky that he still has his same shunt at four and half years old. No complications so far and no surgeries since!

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Spina Bifida is called a snowflake condition because you don't know exactly how the

nerves are going to be damaged, but it's primarily determined by the location of the

opening in the spine. The neurosurgeon explained the defect as a zipper that didn't zip

exactly right. Sometimes the zipper is undone high up, in the middle, or most

commonly, at the lower spine. Jack's level was around T10-T12 which is about mid-back.

Everything lower that that is affected for him which includes some trunk movement,

legs, and bowel/bladder function. Some Spina Bifida  patients have breathing and

feeding issues because of the brain malformations that tend to go along with the

spinal issues. Luckily, Jack has had none of those.

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Through the years, we've done physical, occupational, developmental, and feeding

therapy. We never thought he would roll over, sit up without support, crawl, stand,

take steps, etc., but he has done it all in his own time and in his own way. He loves

doing tricks and going "super speed" in his wheelchair. He loves to tell me about how

good he is at standing and walking in his "stand-up braces"! We are so thankful to the

therapists that work with him to accomplish these goals and more and all of the

amazing people at High Hopes who have loved on our baby!

 

                                                                                                              ~Jennifer and David 

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