On Monday, December 4th, Jack was diagnosed with Spina Bifida (open spine), a rare birth defect. Therefore, Jack's spine did not form properly, which will impact the rest of his life. There are about 1500 babies born in the United States per year with Spina Bifida. It occurs when the neural tube, which becomes the spinal cord, does not close properly during the first 4-6 weeks of pregnancy. Doctors and researchers have not determined a cause yet. There are four different types of Spina Bifida, and he was diagnosed with the most severe type, myelomeningocele; this is also the most common. This diagnosis means that he will have limited mobility in his legs, as well as other health complications. As you can imagine, this was the most devastating, heartbreaking day in our lives.
After meeting with teams of doctors, we have decided to undergo fetal surgery, which means that Jack’s spine will be repaired before birth. There are some serious risks associated with this surgery, but some of the potential gains do not exist if we wait until to repair his spine when he is born. Spina Bifida is incurable, but research indicates that closing the lesion in his back prior to birth can lead to improved outcomes and a better quality of life.
Jenna and Jack are scheduled for surgery on Tuesday, January 16 at UNC Children's Hospital in Chapel Hill, NC. This is dubbed his “Butt Day” in the Spina Bifida world because his butt and back will be exposed during the surgery allowing his spine to be closed, and then he will be tucked back in Jenna’s uterus to continue cooking! After the surgery, Jenna will spend approximately 5 days in the hospital recovering and being closely monitored by the medical team at UNC. Then, she will be released to go home and be on strict bed rest the remainder of the pregnancy. Bed rest for a running enthusiast is not ideal, but she is ready to trade in her running shoes for Netflix, books, crossword puzzles, and coloring books. Jenna’s mom even tracked down a Gameboy, circa 1995, so she can play her favorite video game, Tetris. And, of course, visitors from friends and family will help pass the time and boost her spirit! The most common risk associated with the surgery is preterm labor, so we want him to stay relaxed and cozy in there as long as possible. When Jack decides it's time to make his appearance, Jenna will undergo a caesarean delivery to officially welcome sweet Jack into this world. We can’t wait for that day, but we don’t want it to be too soon! We hope he’s an April baby!
We would be lying if we said we weren't fearful of what the future holds, but we know that he was given to us for a reason, and we love him and will continue to fight him. We know that he already has an army of people pulling and praying for him. We have been inspired by other families who have received the same diagnosis; they have given us hope and optimism during this challenging time. If you'd like to take a look at these families, check out the Facebook or Instagram pages: Redefining Spina Bifida. We hope that in the near future Jack will be joining the ranks of these resilient, strong, joyful children.