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 Hello and Welcome to MAGIC! One of the blessings in my life is my son Kaleb. This is our story.
I had a fairly normal pregnancy. I had gone into pre-term labor seven weeks early which was able to be stopped with medication. Then I was put on light duty, no lifting or being on feet for long periods of time. (tough to do as a nurse!) Four weeks later, Kaleb came into the world three weeks early. He was given oxygen and monitored by the intensive care team. It was frightening to see all those nurses and doctors around him, but after a short while he perked up and all seemed well. We went back to the room and I had the perfect baby boy.
When Kaleb was 4 months old I noticed he always turned his head to the right when he looked at things. I thought he was just being coy, but wondered if there was more to it. I was reassured by his pediatrician it was nothing to worry about. Then at 7mo I noticed Kaleb's eyes kind of "jiggled". I was again assured it was nothing to worry about and he was just fine. When the jiggling persisted I took Kaleb to a pediatric ophthalmologist. I was sure Kaleb had a lazy eye and it needed to be patched. At the visit I was told Kaleb had ONH. ONH?? What was that? Then the doctor told me Kaleb was blind. I was also told he would never be able to read or drive a car and he was probably severly brain damaged. I left the office in tears, scared, angry and wondering how someone could say such things about Kaleb. We were scheduled for an MRI in two days.
I was so scared and felt so alone! It was the longest two days of my life. The MRI showed normal brain development. I was relieved and grateful. The doctor said I should be be so happy because he was still blind. I told the doctor I was not convinced because if you put a cheerio on the floor Kaleb would crawl to it. I was told he must have sensed it. But I had seen him do it and I didn't believe he had "sensed" the cheerio on the floor. My next call was to a different pediatric ophthalmologist for a second opinion. The new doctr confirmed the ONH, but told us it was possible he had some vision, but couldn't predict how much. He set Kaleb up for another test, a VEP (vision evoked potential) also called a VER (vision evoked response). This test showed Kaleb probably did not have vision in his left eye, but they were pretty certain he had some functional vision in his right eye!! Finally, someone believed me!
My next task was find out all the information in ONH I could. This brought on a whole new set of issues. I learned all about SOD. I found out there could be hormonal problems and developmental delays. So I called our local Birth to Three organization and we started to have physical and occupational therapies come into the home to help Kaleb learn his gross motor skills and help him with his fine motor skills. It was our goal to keep him up to speed with his peers. I also began weighing and measuring Kaleb periodically. I noticed right around 11 months of age he stopped growing and gaining weight. He went from being 90 and 75% to below zero-not on the charts!! I asked the pediatrician and was told don't worry, he's fine. But I was worried, so we went to see a pediatric endocrinologist. She validated my concerns and asked why we had not been in sooner. She was disappointed when I told her I was told not to worry about his height and weight. She ran a lot of tests and found out he was severly growth hormone and cortisol deficient. Finally, we had a reason as to why he was not growing. Kaleb was started on growth hormone replacement and cortisol replacement and began to grow again!
Our next adventure was Kaleb's teeth. We went to the dentist because he was complaining his teeth hurt. We were told Kaleb's teeth are very soft and his molars have big pits in them. While they do not know for certain, but it is most likely related to being growth hormone deficient when those teeth were developing. We are hoping since he is on GH threapy his adult teeth will be fine, time will tell.
One thing I want to comment on, when I was doing my initial research I found a lot of information that children with ONH-SOD have mothers who drank alcohol excessively or did illegal drugs during their pregnancy. When I found out there was something wrong with my child I wanted to know everything about it I could, but the reports about the alcohol and drugs did not apply to me. It was heartbreaking to read that there were people who thought I had caused this. I was devastated to say the least. As a mother I blamed myself anyhow, but then to read these horrible things was awful. The more people I came in contact with who were dealing with the same thing all stated they to had not done drugs or drank. I can not tell you how relieved I was when Dr. Borchert explained that I did not cause this and those early reports about alcohol and drugs had been disproven. I have also noticed most of the literature that had claimed alcohol and drugs to be a factor is not accessible, meaning it has been pulled because it is untrue. There is nothing anyone did to cause ONH-SOD and there is nothing anyone could have done to prevent it from happening.
That all happened about five years ago. Kaleb will be 7 yo in March! Right now he is in a regular classroom and doing quite well. I have been very up front and honest with Kaleb about his diagnosis and have taught him how to advocate for himself. I think as he gets older these are skills that will come in handy. Each year I go into school with Kaleb and we talk to all of his teachers and when they ask questions, I try to have Kaleb answer them. We have also taken the approach of being upfront with the kids in his classroom too, this has been proven to be helpful for Kaleb. The kids understand the basics and because of that it is no big deal to them and so far Kaleb has not been the subject of any teasing or bullying.
I can not say Thank you enough to the MAGIC Foundation. They helped put us in contact with people who knew what were going through. After the initial diagnosis I felt alone, but with MAGIC I found out very quickly that there are people who care and treat you like family and make sure you know you are NOT alone! Thank you MAGIC!!
Email us: ContactUs@magicfoundation.org
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