I wanted to start documenting a little more about my daughter’s eye condition – Optic Nerve Hypoplasia. First off, I want to note we are EXTREMELY fortunate with the hand she’s been dealt. I will get into the details further along, but while I have your attention – you are your child’s ADVOCATE. If you feel something is not right or you aren’t satisfied with a diagnosis – it is YOU who is the voice of your child. Push to get the answers you need and don’t be afraid to ask questions, take advice from others, research the heck out of something and/or get a second opinion. At the end of the day, you could be the difference between treating your child correctly for something before it is too late.
I will take you back to 2015 – Audrey’s birth year. Everything was going along great – she was our first baby and we were so in love with every little thing she would do (obviously we still are!). Months moved on, and it was my Mom who brought it to our attention. She asked if Audrey was tracking me during the day or if she would blink when I moved something quickly in front of her eyes. News to me, she was our first baby, I guess I wasn’t even paying attention THAT closely!
We visited her Pediatrician at her three month appointment and brought it to her attention. She didn’t seem too concerned (we didn’t blame her too much for not catching it because babies eyes are still developing at this time and they can still appear cross-eyed up to this point), but she recommended we visit an ophthalmologist.
My husband and I scheduled the appointment, thinking she just had a lazy eye (I would be remiss if I didn’t mention the amount of behind the scenes Google searching and worrying I did, but my husband said to let the doctor take care of the diagnosis for us).
We stepped into the appointment, pretty anxious and CONVINCED she had a lazy eye. The nurse dilated her eyes, we sat in the waiting room until we were called back. The doctor was extremely pregnant and informed us “today was her last day (she seemed checked out).” Fine, fine, fine, I’ve been there – but the next part left us baffled…
She examined both of her eyes. Rolled her chair back and delivered the blow
I am also extremely aware that people deal with SO much worse and don’t want to down play anyone, but this was a shocking diagnosis for us, one where we had no clue how it happened and were left with so many unanswered questions.
“Your daughter has optic nerve hypoplasia affecting her right eye.”
Husband and I: “What does that mean?”
Doc: “She has limited to no vision in that eye”
Husband and I: So, can it be corrected with surgery?
Doc: “Unfortunately not”
Husband and I: Can it be corrected with contacts or glasses?
Doc: “No, it can’t be fixed with contacts or glasses. She will need to wear glasses to protect her good eye.
Husband and I: [visibly upset and shocked with the diagnosis and getting frustrated for the lack of information] “So there is nothing we can do to correct this?”
Doc: “The only thing you can do is patch her good eye for 30 minutes a day so she can try to regain vision to her affected eye.
Husband and I: “How do we do that?
Doc: They will give you a piece of fabric that slides over the glasses lens and restricts any light.
I KID you not. This was the conversation we had with the Doctor. Not only was there clearly no empathy there, we also were left asking all the questions we could think of in that short 10 minute diagnosis discussion. She did schedule an MRI to confirm this was the case and check for any other issues that tend to accompany this disability.
We left devastated. How did this happen? Was it something I did during pregnancy? Was she going to be okay and able to live a normal life. We called our parents…
The whole family found out and everyone was extremely supportive with their prayers and advise. It was ONE piece of advise that saved us BIG TIME and to this day, I am so thankful for it!
My Uncle (who is a Priest) had some really bad surgeries and doctors that he had dealt with in the past. He recommended we get a second opinion. I actually remember being reluctant to it at first, like what difference will it make essentially, but my Mom pushed us to do it – Thank Heavens!
I WAS the type of person who trusted and valued everything the Doctor said and really didn’t question much. It is until we got the second opinion that I no longer have that attitude and STRESS the importance of it to others when they receive a big diagnosis. I now tend to do my own research behind the scenes from various sources so I can understand things more fully and ask the right questions.
Fast forward to the second opinion and a different hospital system. My Uncle found this Doctor (still her Doctor to this day) who specializes in Optic Nerve Hypoplasia (also had no clue that searching the specific disorder could be so important).
The vibe was completely different. Empathy and understanding was present – he was present and explained everything in understandable terms. He was positive, optimistic and everything we needed after experiencing such a crummy Doctor experience prior. One shocking stat we were thankful for was that 80% of Optic Nerve Hypoplasia cases affect both eyes… WOW, we are extremely blessed.
This is what got us though – and this is why I am so passionate about sharing this with you…
After her Doctor explained everything he could and answered all our questions, he shared his treatment plan that was SO completely different from our first Doctor visit and one I think about almost daily.
First off, he recommended we visit an endocrinologist, optic nerve disorders can affect growth, etc. Second, he told us we should try to patch her good eye as long as we can (obviously 8 hours would be incredible, but it truly is impossible at that age) so 2-4 hours. Our jaws dropped…we had been told 30 minutes. HIS JAW dropped…that would not even do a dent into the potential of restoring vision to that eye.
He explained that the child’s brain is very mold able at a very young age and efforts during this time can be huge in potentially regaining vision to her bad eye. He also mentioned that by patching, the brain is rerouting signals to the bad eye and almost forcing her to use it because that is the only one available.
I will share more about our journey in later posts, but on the morning of her surgery, I cannot feel more compelled to share where we began with all of this and how far we have come. We are continuing to push her to regain vision to that eye and are hopeful this surgery today will assist us in doing so!
Please say some prayers for Audrey, ourselves and all others out there who are affected by illness of any kind!
Whether it is your own diagnosis, a daughter, son, Mom, Dad, family member or friend – I encourage you to get a second opinion upon receiving a diagnosis, particularly if it leaves you feeling uneasy. Do your part – research, research, research, watch your child, monitor developmental milestones, write down questions and lastly, be the advocate for your child, a loved one (and yourself). You are their voice and intervening at a young age could be the difference in their lives.
Follow me on Instagram @lisastwocents
Pinterest https://www.pinterest.com/mytwocentsblog/
Follow my blog with Bloglovin
