Chazz’s Story

This is pretty hard to write. But I will do my best. Even thinking about it makes my brain numb.

It all started after Chazz’s delivery (although we wouldn’t know it for another couple months.) He was born a happy, healthy, and seemingly normal little dude. We spent a few extra (scary) days in the hospital due to him having very low blood sugar levels and then fighting a little jaundice. We didn’t know it then, but these were HUGE indicators of Optic Nerve Hypoplasia.

Fast forward to around 4 months of age. Chazz’s left eye always seemed a little “off” but I was told it was normal for the first year and not to worry. But both Roman and I both felt something wasn’t right. Our parental intuitions were screaming something else, and we both felt it.

Chazz’s pediatrician agreed, we should go with our gut feeling and take him to a pediatric optomologist for an eye exam at about 6 months old.

That was the hardest day to get through. I remember feeling silly. Like the new mom, over-worried about her first baby. Or that at the most he was going to need glasses like his daddy. That the appointment wasn’t really anything but me being crazy new mommy.

But we weren’t silly. Or overreacting. After a pretty quick exam, we were told that his optic nerves were severely underdeveloped, effecting his vision. We were told that he would need to have an MRI to see how bad it was and to rule out any brain defects that can occur along with ONH.

We were given a few websites to look at and a handful of papers to read, and we were on our way. All in under an hour. It was too quick. Like ripping off a bandaid.

Leaving that building, I felt so defeated. And just…. numb. I can even describe it. I just wanted to cry and cry and cry.

Since that first day, Chazz’s journey has continued.

We did take him in for an MRI.

That was the worst day ever. It involved not feeding him for 6 hours and him being under anesthesia. I can’t even imagine how scared he was, but both Roman and I were scared out of our minds for him. I remember posting about the MRI, but I remember that numb feeling even more.

We had to wait in the lobby for what felt like forever. But when I finally got to see him, it was a great feeling. I nursed him right there for an hour, not caring who was looking or who might care.

Chazz was such a tough little muffin through it all. I am still so proud of how well he did. It was a huge hurdle in our little journey. But we got through it.

We waited for days for those results. I cried and prayed that they would be normal. When we got the results it was relieving to find out that Chazz’s brain looked normal.

ONH can sometimes cause mid-line defects and pockets in the brain. The tissue that seperates the two hemispheres of the brain can even be missing altogether. In fact, 70% of those with ONH have one or both of these defects.

Chazz is our lucky little man!

But his pituitary gland did look a little small. At 6 Months old his blood work did show that it was, and not producing enough growth hormone.

Growth hormone supplements are available via a shot once a day for 5 days, every week until about 12-16 years of age. Sucky.
And spendy.

Over half of those with ONH have an underdeveloped pituitary gland and/or hypothalamus. This can cause low hormone levels (like growth hormones and testosterone.) This can also effect their blood sugar and body temperature.

I have started to notice Chazz getting hot really easily. And he always takes his socks off as if he were hot. ???

All these little pieces start coming together. My borderline Gestational Diabetes was a red flag. Chazz’s low blood sugar at birth and jaundice were other red flags.
“Why does he always look to the right?”
“Why does his left eye wander so much?”
“Why does he only like to be held on my right hip?”

All things I wish I new were adding up to something. Things I wish his doctors knew too. Red flags that all doctors and parents need to know more about. 1 in 5000 babies are born with ONH. And that number is increasing at a pretty rate.

This is Chazz’s Story so far. But it’s no the end of the journey. There is still much more to learn.

Chazz still needs an appointment with a pediatric endocrinolgist to have his hormones further examined and to find a solution to the deficiency. More bloodwork 😦

He will need to continually see an optholmologist (eye doc) every 6 months or more to access his vision.

Chazz is one tough little man who is so determined. I know this isn’t going to hold Chazz back one bit!

4 Comments (+add yours?)

  1. Trackback: Tuff Muffin: The Grand Opening + ONH Info-Drive « Forever&After
  2. Anny Jo
    Jan 28, 2011 @ 13:21:15

    I’m glad I found this wedsite and the information shared about this little man. I was actually looking for information on the link between autism and hypodysplasia when this website and article came up as suggestion. After my son was diagnosed with autism, his psychiatrist suggested that he get checked for the eye disorder when I told him that my son’s vision was getting worse. I’m currently waiting for his eye doctor to call me back to set an appointment to have his eyes checked and will probably get a few other things checked as well after having read this article. He was just diagnosed Tuesday of this week and I still have some other treatments I’m waiting to have scheduled so that I get him on the right path to make his life a little easier and more tolerable. I want to thank you very much for sharing you guys’ story and will update you as often as possible on any further diagnoses we run across with my little man. You and your family are very lucky to have been able to catch his problems as early as you did. My family’s hearts go out to you and we will keep you in our prayers. Good luck to you and your little man Chazz.

    Reply

    • Forever&After
      Feb 02, 2011 @ 21:06:22

      Well I am glad you found my post too. Hopefully all will go well with your little guy as well. Let me know how it goes and if they find a connection.

      And thank you for the sweet comment and your prayers. It all helps!

      Reply

  3. Trackback: Another Successful Appointment « Forever&After

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