Story of Hunter

by Rebecca Ehnstrom (mom)

Hunter was born on September 13, 2018 at Children’s hospital of Philadelphia. Hunter has spina bifida, hydrocephalus, and Arnold chiari 2 malformation. On June 15,2018, Hunter and I underwent open fetal surgery at CHOP to close his open lesion on his spine in the hopes of preventing more damage. I was 25.2 weeks pregnant with Hunter during the surgery. After he was born, he spent 13 days in the nicu at CHOP due to some breathing issues. Hunter underwent surgery at 6 months old to have a shunt placed to manage his hydrocephalus.

Hunter turned 10 months old on July 13th and is doing great! He still receives in home physical therapy once per week and although he is a little delayed gross motor wise, he has far exceeded our expectations. Without fetal surgery, Hunter should have been paralyzed from the waist down and would have needed a shunt placement at 2 days old. With the success of the surgery, he has movement down to his toes, he does have some weakness, but we are working on building his strength. It is still unknown what type of mobility assistance he will need in the coming years as he tries to walk, but he will do great with whatever life throws at him! Plus, his older brother, Austin, is a huge supporter and will help him with any obstacle thrown his way!

Update Oct 24, 2019

Hunter will be having tethered cord surgery on Friday, November 8th at CHOP. It’s a pretty intense surgery and requires a 7-10 day hospital stay. Prayers for Hunter!