This is happening in real time.
As much as I try to stay positive, I choked a little as I write the title. I am still sadden by the news every time I sit down and think about it. The even more worrisome thing is that there might be more underlying layers to uncover. We are still in the process of investigating more. I feel I need to jot these down so keep my mind in order.
"Morning Glory Syndrome is a very rare syndrome with an estimated incidence of 1 in 10 million, in the global population. Some individuals have mild symptoms, while others may have more severe symptoms. The main symptoms of MGS include lazy eye, poor vision, color perception difficulties, and squinting." - Dovermed.
This may be too long for all of you because everything is still so fresh in my mind so I might get too detailed before I get to the real situation. I just need to let it out.
It all started when Sarah was between 1 year to 1.5 years old when we noticed her right eye would wander in a different direction. This ONLY happens when she gets too tired but on normal days, her eyes were completely fine. She could see well, point out colors, shapes, recognize people/ items near and far so we didn't find any concerns.
During her 18 month developmental check-up on February 2019, the doctor noticed it too (the queue time took longer than usual and it was due for her nap). She did suggested us to visit the eye doctor which Jhon and I agreed but wanted to visit when Sarah was a little older because she had bad stranger anxiety. She would cry or get upset as soon as a stranger even looked or acknowledged her. Yes, immunization checks are a bit challenging where she would cry just by the nurse touching her. I couldn't imagine how horrible an eye check up could be especially when she needs to stay still and cooperate.
As Sarah grows, her stranger anxiety was reduced and I figured, we were ready for that long over due check-up. I wanted to go to Polyclinic for a referral early this year but COVID-19 just happened and it seems every where was a scary place to go, especially a clinic or hospital. We postponed for the second time.
Fast forward to July 2020 when Singapore has exited Circuit Breaker and moved on to Phase 1 and 2, Jhon and I decided to set an appointment with the Polyclinic. We know that Covid-19 won't be going anywhere soon and the cases were more or less handled. Most importantly, the country has also set up proper procedures, unlike the earlier part of the year when everyone was panicking and struggling.
I digress.
Knowing Sarah, I gave her a heads up at least a week before the appointment on what to expect. We always had a doctor's toy kit at home so that was helpful. We play pretend eye-check up so she was more or less prepared for it. For the polyclinic visit, Jhon got to join us for the consultation. I explained our concerns to the doctor as I mentioned above and the doctor referred us to KKH Eye Centre.
That time, our appointment was due on September 2020 so I was more than happy when I got a call informing that they can push forward the appointment to August 2020.
Honestly, we didn't think much of it. We thought, it was probably a lazy eye and Sarah would need glasses and an eye patch to force her eye muscles to work harder. I looked it up on the internet. It was all good. We just need a doctor's confirmation and advice.
Due to Covid-19, only 1 patient and 1 guest is allowed in the hospital so it was just Sarah and I in the colorful and comfortable children's waiting area. We had to go room to room, getting her eyes checked 3 times with 3 different doctors from optometrist to ophthalmologist. Sarah was a champion. I was so proud of her. She was a little shy but obliged to every instruction. When she saw the eye test machine, she was all raring to go to use it. But as cooperative she was, she is still a toddler so I could tell, testing and checking her eye accurately was challenging.
When we finally get to see our doctor for the final verdict, I was all prepared for what was going to be said. The doctor tried her best to take a photo of Sarah's eye and put the tool aside. She looked at me and told me that she had poor vision and had to wear eye glasses.
She later then added by saying Sarah had an eye defect called Morning Glory because when you see the eyeball internally, it looks like the Morning Glory flower. Sarah was on my lap, minding her own business. I squeezed her tightly knowing it was more for me than for her. To be honest, when the doctor said "eye defect" and showed me the photo of Sarah's eyeball , everything I heard started to sound foggy. I had to muster more strength to buck up and pay attention.
That was not all.
I was informed that people with Morning Glory Syndrome tend to have other underlying problems, mainly regarding her brain nerves so Sarah had to go for an MRI scan. Being a toddler, she had to go under general anesthesia for it. I was told it was just protocol. I was told it was just to check.
The doctor didn't proceed more about the matter and continued to tell us that Sarah need glasses and has to wear an eye patch on her good eye for 2 hours per day. When I left the consultation room, I was still dumb founded but still in mommy mode because we were still moving about making appointments. The lovely nurse took us to Diagnostic Imaging for us to book Sarah's MRI scan where Sarah was singing nursery rhymes loudly and proudly for all to hear. I was so proud of her. She is a good and brave girl so I have to be a good and brave Mama.
All this while, Jhon was waiting for us outside the hospital which poor thing for him but I was so glad he was around. As soon as I saw him, I felt I can breathe again. I still had to be strong for Jhon as he is a worry wart. I didn't want to immediately break down let alone a public. I know everything is not set in stone. We are still in an investigating phase. There's no point going all broken down over news that is not official right? For all we know, Sarah is fine.
But it is the fear.
No parent want a single harm come even close to their child.
We went into that hospital thinking it is just a routine check-up, nothing more. It is like asking a contractor to make a routine check up and he tells you oh, you have cracks and we need to investigate if it's hairline or deep cracks. You will be like "What?!"
I dread the night I laid on my bed learning about Morning Glory Syndrome and what it was connected to.
The cause of Morning Glory Syndrome developmental defect is unknown and there is no cure. We can try to improve the eyesight but that's it.
Ok, sure. I was caught off guard but if I disregard the details, she just have an eye problem since before birth. Full stop. Until I found out what Sarah's doctor was trying to find. She didn't mention to me in detailed other than "checking her brain" but I found out through the MRI form and internet and that was Moyamoya Disease.
"Moyamoya disease is a rare blood vessel (vascular) disorder in which the carotid artery in the skull becomes blocked or narrowed, reducing blood flow to your brain. Tiny blood vessels then open up at the base of the brain in an attempt to supply the brain with blood.
The condition may cause a ministroke (transient ischemic attack), stroke or bleeding in the brain. It can also affect how well your brain functions and cause cognitive and developmental delays or disability.
Moyamoya disease most commonly affects children, but adults may have the condition. Moyamoya disease is found all over the world, but it's more common in East Asian countries, especially Korea, Japan and China. This may possibly be due to certain genetic factors in those populations. " - Mayo Clinic
I cried! I cried BAD! I was so scared! I am still scared since we haven't do the MRI scan yet!
I try not to think too much about it but I already knew. It's already at the back of my head. We recently had a developmental check up and Sarah passed with flying colors. Her doctor said she does not have the symptoms or obvious concerns. You see, people with MGS are usually associated with several conditions such as Moyamoya, down syndrome and many more. In terms of physicality, motor skills and mentality, Sarah was great. She was off the charts.
So now we are just looking and hopefully not finding more internal problems. So ya. This is where we are now. Trying to be positive but also want to be aware of all the cards on the table. I feel we are in a limbo. Kinda helpless so I am taking one day at a time.
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