Disclaimer: I am not an expert in the subject this is a general account of what I have learned from life experience.
When William was first suspected of having vision issues he was only 4 weeks old. After seeing the retinal specialist at 6 weeks old based on the extent of the damage we suspect the majority of the damage took place in utero. This leaves the question why didn't we catch it sooner? Every new born receives an extensive hearing test, but the eyes don't get looked at nearly as closely, why is that?
William received a red light test at 1 and 4 weeks of age. The red light test is where a light is shined directly at the retina, the eye should reflect a red color meaning it's healthy and functioning. This test can tell you if there are issues with the cornea, lens, and in some cases the vitreous.
William's pediatrician first raised concerns at his 1 month check. While he had a red light reflex our pediatrician still felt he wasn't focusing and following like he should. While it could still be normal for his age to be developing this skill she recommended a referral to neurology. In an effort to avoid yet another doctor appointment alone because of COVID I asked to hold off and see how things developed over the next week and our pediatrician agreed. After all William had just started looking at things in interest. In particular he loved laying and watching the fish swim in our fish tank. Despite this after a week there was no change in William's vision or lack there of. I made the appointment with neurology thinking it would give me the reassurance that everything was ok... or so I thought.
After 3 hours in the neurology office and 2 doctors opinions there were many concerns raised. I was so Overwhelmed I made them repeat it all to my husband over facetime. There I was breast out, baby sucking away because it was long past meal time. Phone in the other hand I held the phone with dad on facetime and the doctor saying words like cerebral palsy, and sedated MRI. I cried to whole drive home!
RECOMENDATION: No matter how insignificant the doctor appointment take someone along to drive even if they can't go in with you, you never know!
The next week was a blur of appointments. Physical therapy, COVID test, Sedated MRI, and Ophthalmology. The MRI was the worst! I had to lay my 6 week old baby with an empty tummy on a table with a small gas mask laying beside him and walk away leaving him with strangers for the first time. I was so overcome with emotion the doctor had to remind me to give him a kiss before I walked away. It was such an out of body experience some details are a blur while others are imprinted in my brain forever!
On the drive home my husband and I were arguing from the sheer tensions of the day. Not 10 minutes into our drive and we got a call from the neurologist. "Bilateral Retinal Detachment". We were completely perplexed! We pulled to the side of the highway and tried to absorb the news. Cerebral palsy was out but a whole new world of possibilities had been opened.
Early warning signs to look for:
1. Discoloration
Look closely at your child's pupil for white or yellow areas. You can also take photos and look for the red eye reflex. Most of us use the red eye remover in photoshop but in this case that's what you want to see!
2. Larger than normal pupils
Babies naturally have large pupils that reduce in size as their eyes develop. If this lasts longer than the first month of life it's something to bring up with your doctor.
3. Crossed eyes
Eye looking across the nose at each other.
4. Eyes not focusing together
When one eye focuses yet the other wonders or fixates on a different point.
5. Small or different sized eyes
Some genetic eye diseases are a lack of blood flow. This can cause issues in the growth of the the eye itself.
6. Bloodshot eyes
If you are seeing blood in the eye this could be a hemorrhage due to under developed blood vessels.
7. Nystagmus
The rapid uncontrollable shuttering of the eye. This can be normal in very young infants but should not last past a month of age.
8. Tracking
By at least 4 weeks of age your baby should be able to track objects and faces with their eyes. You can test this by slowly moving a toy across your babies face. They should be able to follow it with their eyes. Keeping in mind infants see black and white better than color at first.
Tip: you can turn lights off and use a light up toy.
9. Light sensitivity
No matter the age you should see a reaction when you walk outside with baby on a bright sunny day or turn the light on after nap in a dark room.
If you have even the slightest concern know your baby is never too young for an ophthalmological exam! Concerns can become clouded by self doubt and other opinions, always trust your instincts and your pediatrician!