Spina Bifida Warrior Jax's Journey

"On May 17, 2018 we had an ultrasound at 20 weeks. Being our first baby we wanted to know the sex ASAP! So, to us that's what the ultrasound was going to show us, boy or girl. We didn't have anything on either side of the family to lead us to believe our baby was in trouble. The doctor looked through our images and told us there was an opening in the baby's spine. He was concerned and wanted to contact Barnes Jewish Hospital in St. Louis and send us to their Fetal Care Center. The following Monday we drove to St Louis for more tests and to meet multiple doctors. Our baby was diagnosed with Myelomeningocele. It's the most serious form of Spina Bifida. The bones of his spine didn't form the normal way leaving an opening in his back that is not covered by skin. This allows amniotic fluid to enter and causes damage to the exposed nerves. The opening located on his spine causes damage to the bladder and bowels, no sensation in his ankles down, too much fluid on the brain, and his cerebellum is being pulled out of the skull into is spinal canal (this is called Chiari Malformation). Having the fetal surgery will stop further damage to his bowels and bladder, reduce the risk of needing a shunt when he is born, give him a better chance of mobility and it will reverse the Chiari returning that part of his brain to his skull. As of right now, we don't know the amount of damage that has been done. We won't know until he is here and some of it we won't know until he is older. What we do know is they are giving us this opportunity to help our baby now so he can heal inside the womb and we are beyond thankful for this! After surgery I will have to stay in St. Louis on bedrest for 12 weeks until he is born. Our goal is to keep him in there for as long as possible but it is very common for babies to come early after after a procedure like this. He may have to stay in the ICU after birth but it is also unknown for how long. It's going to be a long road but we have a huge support system. We thank you all for your prayers, positive vibes and thoughts. All your kind encouraging words are getting us through this. Our family is so thankful to have so many amazing people that love us!"



Once Jaxon was diagnosed the doctors scheduled the surgery within a month leaving Mandy and Justin little time to plan. Mandy’s surgery was on June 15th and is now on strict bed rest for 12 weeks. FMLA (Family Medical Leave Act) will only provide 12 weeks of pay. Mandy will need to take more time afterwards for maternity leave and for doctor appointments for Jaxon. After FMLA pay has exhausted Mandy and Justin will be trying to live off one income which will be a struggle for them with the unknown cost of baby Jaxon’s medical bills, with just buying a new home, and having minimal amount of time to plan for this situation. I am asking for donations to help Mandy and Justin get through this difficult time. All donations are appreciated. Thank you for your time!