Myles Hill was born October 3, 2019 with Spinal Muscular Atrophy (SMA).
Myles was not breathing when he was born, but when he started breathing again, his cry was quiet, and he wasn’t moving. Doctors at Genesis East where Myles was born couldn’t figure out what was wrong, so after one week Myles was transferred to the University of Iowa Stead Family Children’s Hospital. Results of an MRI and an EEG showed Myles had three to four mini-strokes and a nonactive hemorrhage from the stress of the birth.
Jadie and Joe got to bring Myles home at 19-days old, but two-hours after being discharged, they were instructed to come back because test results showed Myles was positive for Spinal Muscular Atrophy (SMA) Type 1. This means Myles was born with a protein missing inside of the cells controlling his muscle movement. Usually, children with SMA Type 1 have trouble swallowing, breathing, walking and talking on their own and are likely to pass away before the age of two.
Myles started a gene therapy called Zolgensma, a $2.1 million drug, to artificially replace the missing proteins. After two weeks, Myles’ cry got louder, and he began to move his arms and fingers. He went from being constantly on BiPAP to currently only using BiPAP at night and he still gets fed through a feeding tube every four hours. Currently, Myles is four months old and continues to improve. He is now more vocal and can move his arms and legs and hold his head up. Doctors said he is where he needs to be at 4 months old cognitively, but still a little behind physically.
According to Jadie, becoming a parent for the first time was already going to be a very new experience that would change her life, but with Myles battling SMA, her life has completely changed these last four months. To be closer to the University Stead Family Children’s Hospital, Jadie and Joe decided to move to Iowa City. This meant that they would have to push back schooling and quit their jobs in Davenport.
Myles has been admitted to the University of Iowa Stead Family Children’s Hospital a total of six times with stays lasting anywhere between two days and 33 days. Jadie revealed that during these times sometimes she and Joe didn’t feel heard. According to Jadie, the staff was great, but when Myles stopped breathing and his heart rate dropped the same night doctors thought Myles should have been discharged, Myles only stayed due to Jadie and Joe’s persistence. That’s when they say they didn’t feel heard.
Jadie joined an online SMA support group where she can share her story and find support from others going through similar situations.
“Another SMA mom told me that they have MD behind their name, but you have Mom,” Jadie said referring to a time she reached out to her the SMA support group about not feeling heard by some hospital staff.
“Parents know their children best,” Jadie said.
When asked about what advice Jadie would like to give to parents going through similar situations, Jadie said that patience and routine are key. She wants to remind parents to be patient if they are not seeing improvement as fast as what they hoped for.
