When my little sister, Bonnie, was 21 weeks pregnant with their second son, Isaac was
diagnosed with a form of spina bifida called myeloschisis. From L1 to S4, he
had an open lesion, exposing the spinal cord to amniotic fluid. Additionally,
he had a malformation known as hindbrain herniation, hydrocephalus, and a left
clubfoot.Bonnie and Isaac were fortunate to qualify for fetal surgery with a world-class team of doctors in St. Louis. On March 22, at 24 weeks gestation, these doctors repaired the lesion on Isaac's back and tucked him back into the womb to heal and, hopefully, reverse some of the damage that had been done. You didn't read that wrong - they actually took Isaac partially out of the womb, worked on his back, and then put him back inside! I did a whole lot of reading and watched the few videos I could find online about it because my mind was blown. I couldn't understand how this was even possible and my request to observe the surgery live was denied - as was the request for the nurse to FaceTime it to me.
After the surgery, Bonnie spent two weeks in St Louis and was then able to return home. Her brief stint outside of the hospital was short lived though, she spent the final ten days of pregnancy on hospital bedrest before Isaac arrived via emergency c-section at 31 weeks. He was born on May 7, 2016, weighing 3 lbs 10 oz. Big brother Evan wasn't really sure about him at first, but with a little quick thinking (and knowing how much Evan loves super hero's) he came around. And little Iron Man Isaac has lived up to his Super Hero status! After 34 days in the NICU at Children's Hospital of Illinois, he came home!
Despite not staying in the womb long enough to see the full benefits of fetal surgery, Isaac is already defying the odds. We are told he will likely need a shunt, and will likely end up in a wheelchair. But at this time he has not required intervention for hydrocephalus, and he is not paralyzed…he has movement in both legs down to his toes!
They are now travelling to St. Louis weekly for appointments with a pediatric neurosurgeon, urologist, and orthopedic surgeon. Isaac is currently undergoing casting for the clubfoot, followed by bracing as well as aggressive physical therapy. He had his first surgery (this side of the uterus, mind you!) on August 10 for bilateral inguinal hernias.
As you can imagine, the medical bills add up very quickly and will continue to
do so as Isaac grows and reveals his needs. The family has also taken a considerable
reduction in income to allow Bonnie to stay home and care for him. So, that is why we are hosting a fundraising benefit to help with medical expenses and continued physical therapy. If you would like to attend, you can find all the details on this Facebook event or for those without Facebook, click here for a flyer.
If you are unable to attend, but would like to help the family in some way, we are looking for items to be auctioned off. If you have a product, service, gift certificate, gift basket, sporting event tickets, etc you'd like to donate, contact me at becky.finfrock@gmail.com. Shirts are also for sale with part of the proceeds going directly to the family, click here to purchase. But be quick, they are only available for another 20 days!
