Optic Nerve Hypoplasia vs Mommy Will Power

I am a huge believer in Mommy’s intuition.  I knew something was wrong with my baby, even though everyone around me was telling me that nothing was.  I am so glad that I didn’t listen.

After 6 weeks of my newborn son never looking at me, not responding to movement and stimuli around him, not showing clear response to light/dark (he didn’t even squint or blink from camera flash!) and not looking at my face – I couldn’t take it anymore.  I took him to his Pediatrician who did some basic testing and determined that he may or may not have a problem, but I was encouraged to wait it out.  I couldn’t.  I was on the phone that same day, finding someone who would see him.  Finding an ophthalmologist that will see a 8 week old infant that is not being referred from his PCP is not an easy task, but I found one.  A few days later, we had our appointment.  She didn’t give me any definitive information but agreed that something didn’t see right.  She referred us as a stat referral to the Kellogg Eye Center to see a team of specialty pediatric ophthalmologists.  He was examined by three Doctors at that visit.

My Husband,  18 month old Daughter,  9 week old Son and myself sat in this office – waiting for them to come back.  I can remember what each of us was wearing, I can remember every detail about this moment.  The moment that the Doctor came back into the room and said we needed to be seen by a Pediatric Neuro-Ophthalmologist to seek treatment for our blind Son.  Our blind Son.  We were told that he had Optic Nerve Hypoplasia, which is a condition that has no known treatment or surgery to cure it.  It never gets better, it actually gets worse.  Every ounce of my being was heartbroken, thinking about my sweet baby boy and how he would never see me, his sister, his family.  He would never see his future family or children, never have a favorite color, probably never ride a bike – the list went on and on.  I was devastated for him.  Completely shattered.  Can you imagine holding your baby and having all of these new realities flood your mind?  It’s awful.

My Husband was staying strong for us.  He reminded me that no matter what, we would give our Son an amazing life and always love him.  Always.  That wasn’t enough for me, I couldn’t accept this – but I was so thankful and humbled by my Husbands love that surrounded us at that terrible appointment and the emotional ride home.  The Neuro-Opthamologist could not see us for 4 weeks.  Four weeks.  I was supposed to wait for 4 weeks to learn what the prognosis was for my sweet child?  There is no way I could do it.  I spent the rest of the night on the phone with offices trying to get him seen sooner.  Shortly before 5pm, I got an appointment for the next day.  I was hopeful that the Doctor would tell us that the diagnosis was wrong, or that we could do something.  He just gave us more bad news, and told us that our son would never see.  Never see.  They said that though some children with ONH do have some vision, that our Sons optic nerves were completely gray – meaning that there was no chance of vision.  Normal optic nerves are pink.  They did not develop during my pregnancy.

I refused to accept it.  I wouldn’t listen.  I gave up on the traditional doctors and started seeking alternative therapies.  My best friend, and co-admin of this page, Rachelle, got me in that same day to see a Natural Practitioner that she works for that did a cranial sacral massage on my Son that same day.  He told me that he felt some overlapping of plates in his skull and referred me to a massage therapist to get additional massages.  The next therapist determined that he had a kinked nerve in the upper hemisphere of his skull that was most likely restricting bloodflow to his optic nerves- preventing them from developing.  Three massages later, and I am 100% serious – my son looked at me.  He made eye contact with me while I was nursing him – during which he would typically just be staring off into space.  He was 10 weeks old.  Every day there after, his vision kept improving.  He began tracking objects, his pupils dilated in response to light – I knew he could see me.  It was magical.  We kept going with these massages that we couldn’t even afford but couldn’t afford not to.  In addition to this, I began taking vitamins and nutritional supplements that are said to promote visual stimulation and healing.  Because I was taking them, my son would reap the benefits through my breastmilk.

I am so happy to report that my Son is now 2 years, 4 months old and has incredible vision.  He can see items up close and far away with a very slight lazy eye that will be correctable via patching therapy.  He may have a subtle color blindness but he is doing everything that I thought he may never be able to do.  It’s incredible.  I am crying as I write this, remembering all of these emotional days and celebrating the journey that restored his sight.  He has since followed up with his ophthalmology team who celebrate right along with us that he can see.  His optic nerves are now the perfect shade of pink!

I have reached out to people who have found this treatment to be helpful for them, too.  Spread the word, please.  Be inspired.  Know that you don’t have to accept anything that you are told that your gut is telling you otherwise.  I encourage everyone to search high and low until they find an answer that they are at peace with, and I thank and love each and every person who helped my Son along this journey so very much.  There is a permanent place in my heart for them, always.

Read more about ONH here

Read an email from someone our story helped, here. 

To all the Mothers who listen to their gut – to everyone in the world who reaches out to support, listen, and help – and to each and every one of you – cheers!

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