Hunter was born on September 13, 2018. He is our happy, second rainbow baby and younger brother to our amazing Austin. During my 16- week check-in with our OB, I had discussed some pains I was having. Out of precaution due to my already high-risk state, they did an unplanned ultrasound. The nurse was quiet during the ultrasound, which was unusual and as she finished up, she said, “ok I’ll go get the doctor for you”. We knew this was not good. The doctor came in and said, “So the good news is that the pains are just a pulled muscle from how quickly you’re growing. The bad news is this area.” As she pointed to the screen, she began to explain that the baby was showing severe signs of Spina Bifida.
She explained that we would be referred over to St. Peter’s University Hospital for additional testing and diagnosis. In that moment our world crashed, we had no idea what to expect or which direction to go in. Within the next few days, we had genetic testing done, more ultrasounds, and an amniocentesis to confirm diagnosis. Hunter was fully diagnosed with Myelomeningocele Spina Bifida and Arnold Chiari Malformation II. They said from their scans it looked like his open lesion was from about L3 or 4 down to S1. With these diagnoses came along his additional diagnosis of Hydrocephalus, along with having a neurogenic bladder and bowel.
Over the next few weeks, we had many phone calls with CHOP and spent two days there going through evaluations to determine if Hunter and I were eligible for open fetal surgery. At the end of the second day of testing we got the exciting yet scary news that we were eligible, but we only had a 2-week window left to have the surgery. On Friday June 15, 2018, Hunter and I underwent open fetal surgery at CHOP to close Hunter’s back. Hunter officially became a “Twice Born Baby”. His neurosurgeon explained that the lesion was much bigger than expected and was L1-S3. After a 3-month strict bed rest, Hunter was born and spent 13 days in the CHOP NICU for breathing complications. While in the NICU his neurosurgeon said he was a medical miracle and a true warrior. We were told without surgery he would be completely paralyzed from the waist down and with surgery the hope would be to have some movement and feeling from the waist to the knees. Hunter was already showing positive movement below the knees, although very minimal, it was still more than expected.
At 6 months old Hunter had a VP shunt placed as his hydrocephalus was causing concern. In November 2019 at just a little over a year old, Hunter underwent tethered cord surgery. In October of 2020 Hunter had an exploratory shunt revision to see why he was having severe fluid buildup along his spine. In the following weeks Hunter was experiencing severe pain in the back and head and vomiting. After several ER visits and additional cat scans, ultrasounds, and MRI’s, Hunter had another shunt revision in February of 2021 where a blood clot was found in the valve of his shunt. The valve and part of his tubing was replaced and since then pain in the back is random. Hunter undergoes repeat MRI’s every 6 months to monitor his shunt, fluid buildup on his spine, and signs of retethering. In addition to all of this, Hunter needs routine check-ups with his allergist for his severe dairy and latex allergies, his urologist to monitor for his neurogenic bladder and bowel, his ophthalmologist for growing pressure from hydrocephalus and his current astigmatism, and his Spina Bifida clinic doctors to monitor any changes and progress on a whole.
Hunter is our little stubborn fighter who tries so desperately to keep up with his big brother. Hunter wears AFOs and uses a posterior walker to get around. He loves his physical therapy sessions weekly and will be starting the preschool disabled program in our school district for the first time this September. Although he has gone through a lot since his birth, Hunter is as resilient as they come and goes through life with a constant smile on his face. He is an inspiration to all those who know and love him.