Sean Richard Brecht was born May 24, 1998. After 3 days of labor and finally a C -section, he came into this world 9lbs 3oz 22 3/4 inches long! His pediatrician gave him an apgar score of 7 with low tone. He was immediately put on an IV for hypoglycemia.

He was such a beautiful newborn! After 2 days they weaned him from the IV. I went into the ICN to get Sean and bring him back to my room. While we were there he started making jerky movements and rolled his eyes in the back of his head. We immediately brought him back to the ICN and when we got there he had a seizure. His pediatrician ordered a CT scan and the results were unclear. We then had an MRI done. The results came back that he has SOD.

The pediatrician wanted him to see the specialists right away so we were transferred to UCSF. Sean spent the next 2 weeks there. They did another MRI which confirmed SOD and that his corpus colosum was fully intact. The next thing was to figure out the hormone levels and dosages. They put him on corteff, thyroxine, Growth hormone and Phenobarbitol.

The Optomologist discovered that Sean has small optic nerves and would most likely read Braille. We finally went home, very overwhelmed, very tired emotionally and physically, and not quite sure what was in store for us. We were only home 2 weeks and Sean spiked a fever and wouldn't take fluids. Right back into the hospital we went. They decided to treat him for some kind of bacterial infection and put him on antibiotics. After a few days and not spiking a fever they took him off the antibiotics. We thought we were home free. Then he spiked another 102 fever in the middle of the night. So they started up the IV again, which took over an hour to start during which he had another seizure.

Transferred again to UCSF where all of his specialists were. After being there 24hrs his endocrinologist confirmed DI. So another 2 1/2 weeks there while they regulated his DDAVP and discovered he also has a hiatal hernia and reflux. He will outgrow the hernia and reflux we were told.

Now home Sean is doing very well! We have early intervention with Blind Babies and his teacher is very impressed with him! She said he is either exactly where he should be with his motor skills or above average. His tone is excellent, he loves to coo (very vocal) and bat at his hanging toys. It's very hard for us to see that we've been blessed with this extraordinary baby but I know that there's a reason for him to be in our lives. And we love him none the less!

The Proud Brecht Family

Sean

This website has been designed to help empower parents of children with ONH/SOD. All the information herein is subject to opinion. If you suspect your child may have ONH/SOD it is recommended that you seek professional advice from a certified pediatric ophthalmologist. No one individual or company connected with this website assumes any liability or responsibility
for it's contents.