Septo Optic Dysplasia

Troy was born 3/26/2013 at 10:06 pm.  He came into this world weighing a whopping 8 lbs 5 ozs and was 21 1/2" long.  I was thrilled to have my first grandchild.  We spent a little over an hour getting to know this new little being that was going to quickly take over our hearts.

After his first bottle feeding the nurse started to wheel my daughter & the baby to a permanent room where they would both stay until the baby was released.  I was thinking to myself,  how great it was that Troy could  stay in the same room with his Mom.  It was a warm & cozy atmosphere.  It was now past midnight and I decided it was time that I head home, to give the new Mom & Dad some time alone with the baby.  However,  I lingered when the nurse said she was going to give him his first bath.  She pulled out a thermometer first to take his temperature. He was colder then he should have been, and she then listened to his chest.  Troy was having respiratory problems.  She quickly explained to us that she was going to take him to the NICU.  A 1/2 hour passed and she informed us his sugar was low, and he would be spending the night in the NICU.   I could see the disappointed look wash over my daughter's face. I assured her that he would be fine and he would probably be back in the morning.

Morning came & with it came more upsetting news.  We were told Troy's eyes were dialated & not reacting to light.  They needed to do additional test to determine what was going on.  An MRI was scheduled.  We anxiously waited for the results. We were then informed that they didn't find any cancer in his brain.  At this point we didn't know that they were looking for cancer.  It was shocking to know that this was what they were checking for.  Any test that came back positive gave me confidence that they were just being over cautious because he was in the NICU. An EEG was done this also came back normal.  Still we waited & waited...days passed & more test were done.  An optomologist came in from another hospital & we were told again that his optic nerves were small.  We began to ask more questions.  Would he have vision loss?  This was answered with a "yes". He scheduled an appointment for a follow up for 3 months.  Next came a appointment with an endocrinologist. The endocrinologist told us Troy was cortisol deficient. He would have to be given medication to replace this.  After he was given cortisol he became more alert.

Troy stayed in the NICU a total of 2 weeks & 1 day.  He was seen by many more doctors including a neurologist & many more test were done.  We finally received a diagnosis that Troy had billateral septo optic nerve dysplasia.  A rare condition that happens in 1 in 10,000 births. 

I hope by creating this blog we can see Troy's progress & share with other parents or grand-parents who may be going through the same thing.

Patty