Mya is turning 9 months old this week, so I’ll be giving a full rundown of just what she’s been up to lately, but today is all about her beautiful eyes. On her 7 month update, I shared our concern with her eyes (and her hips…but one thing at a time, everyone), and after many, many, (did I say many?) appointments, we finally have a diagnosis, a plan, and potentially a solution.
This post is long, because well…this process has been long. I’ve seen 5 doctors since originally writing about her potential eye issues, I’ve been to numerous appointments all around the city, and I’ve done more research than I would say I’ve ever done before. 🙂
Come along this journey with me and lean in to our road to figuring out Mya’s beautiful eyes…
Path to Diagnosis
When Mya was around 2 months old, we noticed her eyes would cross inward occassionally, especially when she was attempting to focus in on something in front of her. At that time, it was still very normal for eyes to cross in babies and so I just kept monitoring it until she turned 4 months and we met with her pediatrician again.
At 4 months, our doctor told us that it is still normal to happen and we will circle back to this at her 6 month appointment.
At 6 months, her eyes were still crossing, but most prominently, her left eye was drastically turning inwards. I went into her 6 month appointment with an expectation that we would begin patching and possibly move towards glasses. It’s amazing once you start talking about patching just how many people were actually patch wearers as kids themselves!
To move forward, we were referred to our city’s Children’s Mercy hospital to meet with an ophthalmologist within a few weeks.
At this appointment, she sat on my lap in the chair and the doctor did a slew of tests with light up toys, noises to grab her attention, and covering one eye at a time with prisms. It was about 10 minutes of watching her eyes adapt and move as attention-grabbing objects were placed to her left and her right side.
The ophthalmologist was certain not to give a formal diagnosis, but didn’t hesitate in stating that she believes Mya has an eye disorder called Duane’s Syndrome, in which her lateral cranial nerve never developed correctly in utero, occurring sometime around the 6th gestational week. When the nerve isn’t functioning as it should, the inner (medial) nerve works double time to overcompensate, thus pulling the eye inward. The only true fix: eye surgery. The surgery would entail loosening and tightening inner and outer muscles to essentially just straighten the eyes. When you would look at her, she would look as if there is no issue. However, she would never have the ability to move her eyes outward past middle as that nerve will never be fixed. If the nerve never works, the muscle won’t do it’s job.
It was a crushing blow. A devastation. My poor baby would need eye surgery, and still in the end, she still wouldn’t have full range of motion of her eyes. Would this mean double vision? Would this mean no peripheral vision? Would this mean she would have headaches? Would she be able to read long texts? Will she have a label on her through all her school years and need accommodations? My heart was broken thinking about how her life may be different.
**I’m going to stop here and explain myself. My daughter is healthy, happy, and safe. She smiles all day, every day. She is beautiful and smart and already shows her adorably cute (and one day going to drive me nuts) stubbornness. She’s my very best friend and she is incredible. I know there are parents that are suffering through the unimaginable. I think about you and I pray about you every single day. Every one of you. I grieve as you grieve and I pray right alongside you. My daughter is not going to suffer, and we won’t deal with worse, because of her eyes. There is no debilitating issue here. But I like to tell people something when they try to compare grief. I had some devastating tragedies in my lifetime, but that doesn’t mean that my grief trumps yours. It doesn’t matter if your grief is not as “big” as my grief, we are still suffering. Don’t apologize for your feelings. It’s big for you and it’s life-changing for you, so grieve how you need to grieve. Don’t compare. We’re all suffering in our own ways at our own times in our lives.**
The ophthalmologist prescribed us patching for about 1 hour a day over her right eye to help strengthen her left. What she was fearful of happening would be that her right eye would become so dominant that her left would essentially stop receiving messages from the brain and vision would come almost completely from her dominant side, her right. We went on our way, ordered some adorable patches from Amazon, and started our patching journey.
Our next stop was meeting with the Children’s Mercy orthoptist, a member of the ophthalmology team that focuses more on the diagnosis and does key measurements.
We met with her a few weeks after the ophthalmologist and she.was.wonderful. She made me calm, she answered my million and one questions, and she even called me on the phone after my appointment because she realized she forgot to tell me to keep patching Mya’s right eye at the appointment. The tests were much the same as the ophthalmologist, but a few more distance eye tests where she watched how the eye and actual eye lid changed shape as Mya looked left, right, near, and far.
At the end of the appointment, she said with almost 100% certainty that Mya had Duane’s Syndrome. The only fix was to meet with an eye surgeon and have a surgery consultation.
The orthoptist got me in with one of the eye surgeons for the following week, so off we went to meet with them.
Enter: My Biggest Piece of Advice…
If you don’t like what is happening around you with the doctor, and your instincts are telling you that this isn’t right. WALK. AWAY. Get a second opinion and go with your gut. We have strong intuitions when it comes to our children. Don’t second guess yourself.
The appointment started off all wrong with a DIFFERENT eye surgeon walking through the door instead of the one we were scheduled to meet with. No one told me. Not the registration desk. Not the nurse who met with me before. No one. And when I seemed shocked that the original doctor (the one I extensively researched) didn’t walk through the door, the new eye surgeon went off on a tangent about how many years of experience they had. I didn’t question that. I just want to know where my doctor is!
Not great bedside manner.
They came to the appointment without any toys that light-up, no contraptions that make noise, no prisms, no patches, nothing. He looked her over for about 4 minutes and said he was ready to schedule surgery, she DID NOT have Duane’s Syndrome, and he would just go in and move her muscles the full 6 steps “because she seems to have it the most extreme.”
He didn’t want to see us again prior to the surgery and was willing in those 4 minutes to diagnose her completely different than the last two doctors, and then also begin to schedule surgery.
I was devastated. 32 years of experience does not always equate to greatness.
I was home that night and researching new doctors almost immediately. I could not and would not let that eye surgeon touch my daughter’s eyes.
Misdiagnosis and Congenital Esotropia Syndrome
The next morning I was back on the phone with Children’s Mercy scheduling an apopintment with another surgeon. Turns out the original doctor I was to meet with had a cancellation for the next day, and I nabbed it up. This was actually the only other pediatric eye surgeon currently at Children’s Mercy. If she doesn’t work out, I was looking to travel outside of the KC metro for another opinion.
But from the second she walked through the door with a whole bag of contraptions, an orthoptist alongside her for a second opinion, and an eager face, I was already feeling optomistic.
After what seemed to be 30 minutes of tests and measuring, assessing, discussing, and manipulating, our eye surgeon diagnosed Mya with Congenital Esotropia Syndrome. NOT Duane’s. She agreed with Mr. Horrible Bedside Manner’s diagnosis…and actually explained why.
Mya’s medial rectus muscles (the muscles in the inside of her eyes) was formed a little too tight. Her eyes are not able to move outward solely because the muscle will not actually allow it to. Teamed up with her cross-fixation where she tracks objects on her right side with her left eye and objects on her left with her right eye.
The solution was still the same…eye surgery. We need to loosen her muscles by actually detaching the muscle and placing it further back on the eye to allow a full range of motion. Let me repeat it because it sounds oh so good. She will have full. range. of. motion. With Duane’s, she’d never have that. Now she might.
We left with a plan to meet again, a tentative time table for surgery, and a feeling of hope, of confidence, and camaraderie. This was my eye surgeon and I have full trust in her ability to help my daughter.
Plan for Surgery
We meet with our surgeon and orthoptist one more time to run through a gamut of tests to ensure correct diagnosis, measurements, and plans for surgery. The appointment will be in mid-October, followed by surgery scheduled for November 11th, as long as we leave the pre-op appointment feeling positive we have the right measurements to operate. (I say we…it’s all her. 😋)
The surgery in itself is an outpatient procedure done at Children’s Mercy. We don’t know yet what time, but are told that younger children typically have first appointments of the day due to not being able to eat or drink anything prior. The surgery will take approximately an hour, with more time just helping her come out of anesthesia. We will be able to come home that day, barring no complications, and recover at home as a family.
After someone dear to me had her eye surgery at 3 years of age, her largest complaint was the feeling that her eyes had sand on them, the lights/sun were far too bright, and she had significant redness to her eyes that slowly receded after a few weeks.
Surgery is terrifying regardless of age. It’s not something I’m looking forward to or in any hurry to tackle; however, researchers have determined that 10 months is the ideal time for surgery for this particular syndrome. Mya will be just that on November 11th.
It’s been a long road to where we are now. And as I look into my baby girl’s eyes, I know God made her perfectly. We get our family photos/Mya’s one year photos done on November 4th and I’m so thankful that she won’t have surgery yet. I want to remember this time and have these memories forever. I love her for all she is, and she’s absolutely perfect. Come November, she’ll just be able to see a whole lot better. 🤍