About

Jaxson Douglas Burks was born on July 4, 2012. We knew prior to delivery that he would have medical issues. He was high risk for Trisomy 18 and had a heart defect that couldn't be diagnosed en utero. Jaxson graced us with his presence and was quickly whisked away. The Neonatologist gave us the rundown as I lay on the operating table. He has a hole in the roof of his mouth. The back of his head is flat. His eyes are wide set. We started the medication to keep the hole between the sides of his heart open. And then he was gone. Taken away to Nationwide Children's hospital where we would receive good news and bad news. The good news was that he did not have Trisomy 18. The bad news was that they found multiple birth defects aside from the heart. He has two ureturs on his right kidney, and what looked like a cyst (since broken up) that could affect his ability to process waste. He has a cleft palate. He had a tethered cord (released 3/13). The coronal sutures in his skull were fused (repaired 11/12). He had low APGAR scores. He failed his newborn hearing screen. He had hypotonia (low muscle tone).

The only way to see if Jaxson's heart would be able to function properly was to take him off of the medicine. We had a three day window where major complications could occur if his heart failed. Thankfully, Jax pulled through. His aorta is bicuspid and has a mild coarctation, and is now the least of his problems. 

Jaxson spent 46 exhausting days in the NICU, during which time we saw doctors from Neurosurgery, Plastic Surgery, Cardiology, Urology, Genetics and Neonatology. We saw Occupational Therapy for feeding and Physical Therapy for muscle development. It was discovered that Jaxson has a partial deletion on Chromosome 15, but no one knows what it means. We left the NICU on August 18, 2012, after we made the difficult decision to have a feeding tube placed since he was unable to eat from a bottle.

Jaxson has had 4 surgeries to date: G-Tube placement, cranial vault repair, ear tubes and tethered cord release.

In July 2013, Jaxson was diagnosed with Syndromic Synostosis. After his coronal sutures were un-fused and advanced, his lambdoid sutures (back of the head) fused and his sagittal sutures began to fuse as well. Additional surgery is required to repair the sutures. During the same test, it was discovered that there is fluid on Jaxson's brain and he has a potential chiari malformation. He will also require additional surgery on his spine and may need braces on his ankles to help straighten out his feet when he walks.

There is still so much to learn about Jaxson and what curve balls he's not only going to give us, but the doctors. There is a donation account set up through GoFundMe to assist with expenses. One parent has to stay home with Jaxson until he no longer has a feeding tube. Finances are tightest when we have unexpected trips and extended stays at the hospital. Even the smallest donations help, but please do not feel obligated. The link is www.gofundme.com/jaxsonsride.