Ewelina Dalka – Mom Lifestyle Blog

“When is she going to open her eyes?”

“Why are her eyes so little?”

“Did she open her eyes yet?”

We know people did not mean well when they would ask those questions, but they still hurt, because we had no idea how to answer them.

So, this is not the easiest story to write because as a parent, the only thing you want for your kids is for them to be happy and healthy.

Let’s start from the beginning. My pregnancy was great, my birth was great. (I will share both girls’ birth stories in another post!) While at the hospital, exams are done as usual. Mya had her eyes closed the entire time. “It could take up to 3 days” for her to open her eyes, was the rule we were told, that was “normal” and I mean, they are technically not wrong. The hospital pediatrician examined her eyes, and they looked fine. Not that we ever want to compare our girls to each other, but Adi has probably the biggest eyes ever, and she had them open instantly after birth, so it just felt different to us.

When we got home, I spent a lot of time on google (I know, I know, not what you are supposed to do, but we all do it) and kept searching “when do babies open their eyes” and some people said days, a week, even two. Something felt off to me.

The next day we had a pediatrician appt and Mya was asleep for most of it so they could not do a full eye exam, but I was told to keep them posted if she continues to not open them. So I did. Along with eyes, Mya also had thrush on her tongue so we were going in to check on both. The pediatrician that saw us was not the main one we normally see, but still great. She examined Mya and went to the computer and did not say anything. Then, Jessica, our main pediatrician walks in, and I just thought Uh-Oh! She wanted to take a second look at Mya, as she got a message to come in the room asap. She examined Mya and just her face said it all. Something was wrong. One of the main things I love about her, is she tells it like it is. She said something is wrong. It is NOT normal for her eyes not to open, she does not have lashes, and her reflexes were “floppy” and she said we need see an eye specialist immediately. She told us she would spend the rest of the day searching for the best and get someone to get us in asap. We definitely did not leave that appt very happy. As soon as we got home, we got a call from an eye specialist office saying they can get us in in two days. They normally did not have appts for weeks, but our pediatrician advocated for Mya and said we needed to be seen asap, so the doctor agreed.

2 days later we drove to the eye specialist. I honestly had no idea what to expect, I keep myself together for the girls. I was SO scared inside, mostly because I was afraid of hearing the word “blind” and I would not bring myself to say it out loud. Mya was a champ, she did not even cry once. At that time she loved just soothing on a bottle so I did that the entire time for her and she stayed so calm. The exam was thorough, long. Different tools, measurements, I obviously had no idea what any of it meant, but the doctor did not say anything the entire time. At the end, she let me know her eyes look good and healthy. I probably has the biggest sigh of relief ever.

Then she proceeded with “But….” and I just knew something was off, I knew there was something. The word “bleparhophimosis syndrome” came out of her mouth and she started talking to me about what it is and to this day I felt like everything was a blur, all I remember is her explaining that her eyelids are not opening fully from the top and also from the side and that she will need surgery to correct this sooner rather than later. I had her write the word on a post it for me. She let me know I will see many things on Google, but to not let any of it scare me. She told me she is a part of Lurie’s Children’s Hospital and knows the best pediatric ophthalmologist that specializes in ophthalmic plastic, orbital, and reconstructive surgery, she will talk to him right away and let him know that he needs to see Mya asap. Her and my pediatrician were fighting for Mya to get all of these appts, I was so thankful for them.

We got home and probably a few minutes after, Lurie’s calls and they could see us in two days. Normally they do not schedule appts for months and I learned that very quickly. There is no such thing as “What day and time works best for you?” – it’s we have “Thursday at 2:15” and you better take it. It was a lot to process, thankfully being a mom of 2 under 2 keeps you so busy that you do not even have much time to think. Stephen took the day off work and we went. If I am being honest, I thought Ok, they will do a quick procedure to help her open her eyes and we will be done. Boy was I wrong.

We left Adi at home with my mom and off we went to Luries. While we were in the waiting room, a little reality check hit me when I saw all of the other kids and their issues. It made mine seem so small. I cried because I just hate seeing any kid going through anything. No kid deserves anything bad. But it made me even more emotional as how happy they were. They did not see their differences as a bad thing, and that is amazing. We could learn a lot from kids.

Mya got her eyes dilated and the doctor did exams and said for her age, she was almost a month at that time, and we would wait and see what happens, as she is still so little and the longer you wait for the surgery, the better. He said he is a surgeon, and we are supposed to persuade him against surgery. He asked we come back in 3 months, in October. I asked if there was anything we could do at home to help her, he said no. On the way out, making the appt, they said they did not have anything available until January and I had to call to see if I could get in sooner. Did not make sense to me and I had to call and tell them, so they made the appt for October.

A few days later, I got a call from the eye specialist that we saw. She said she received the Luries doctor’s notes and was not comfortable with him saying to come back in 3 months, she thought that was a long time. She spoke to him and they agreed to see her in 3 weeks instead, and that Luries would be calling me to set that up.

That same day we had Mya’s one month appt and our pediatrician told us she’s glad they pushed up the date because if she does not get help or improve, her not seeing fully could affect a lot of other areas, especially brain development. Normally eye exams are conducted at each visit, but they can’t do that with Mya because she does not open them enough. But, she was so happy with how she was progressing. She said 2 weeks ago she was floppy and barely stayed awake, and now she was growing, thriving, and I just left that appt so happy. My strong girl, growing so nicely.

The next week, the eye specialist calls me and says it still did not sit right with her that the doctor at Luries wanted to wait 3 months before seeing her, so she did some research and found another top doctor who was at University of Illinois. She spoke to their office and explained Mya’s situation and the doctor agreed to see Mya and would fit her in to his schedule. She wanted me to get a second opinion, she kept saying she is “team Mya” and she will continue to advocate for her.

Mya has been growing, thriving, sleeping almost all through the night, I felt like her eyes are staying open longer, and that she is starting to pay more attention to people around her, smiling a ton. I reallllllly feel like she is trying so so hard to open her eyes more. 

Fast forward to this week:

Tuesday we had our second opinion appointment at UI Health in Chicago. The appointment luckily was a little after noon so Stephen was able to leave work a little earlier and come with us. My mom and Adi came too. The more support for Mya, the better. 

The doctors there were great. I really felt like they cared and that they were sincere, not just like another patient. He confirmed her blepharophimos. He said he mostly operates on children closer to a year, but with how severe and advanced Mya’s case is, he does not think we will make it that long. He explained the types of surgeries, explained a little more about the actual syndrome, and overall was very informative. He asked me if I googled anything and of course I said I have. 

So here is a little extra concern, this syndrome consists of 2 types. One of them affects the eyelids only and the other affects the eyelids and ovaries. The only way to determine which one Mya has is by genetic testing. He told us he will make a referral and we need to please do it, so we know exactly what we are dealing with because eyelids you can see, ovaries you cannot and that would require more medical attention, and again, he said the goal is to make sure Mya lives a long happy healthy life. 

He asked that we see the eye specialist there to look over her eyes and that he will let us know straight up if surgery is needed soon or if we can wait and they will work together on an action plan. We agreed to everything and as we were walking out, the doctor found me and told me he spoke to the eye specialist downstairs and he would see me on Thursday morning. Appointment was made. I felt so good, I felt like the doctors here were trying to get us all the answers, help, and care for Mya. I compared it to the doctor at Luries who was originally just like “Ok, see you in 3 months” 

On the long drive back home, I made an appt for genetic testing. We have our initial appt in October, the soonest they could get us in, and that was with the doctors help at UIC again, because they first told us December, but they said we should not wait that long.

At this point I am feeling a little hopeful and waiting for Thursdays appt because I feel like from what the doctor was saying, we would have an answer as to which direction we should go in. We agreed we felt like this doctor was better than the one at Luries. Thursday came and we had a bright an early 830 am appt so living almost 2 hours away, that was a fun drive. My mom and Adi went with us again because it would just make me and Mya feel better to have their support the whole way there and back. I literally do not know what I would do without my mom, but that is a story for another day, she deserves her own blog post. 

The nurse took us back to put drops in her eyes, one of them to dilate her. Mya was not a fan, but she did great! We waited in the waiting room with our wild child who wanted to say hi to everyone and run towards every door she could find. Then we were called in to see the pediatric specialist. Probably the nicest doctor and caring one yet. Actually all of them so far a UIC were so so good. Good to me, good to Mya. No one rushed anyone, they cared. He explained to me that they had to use a little device, later I learned it was an eye speculum, and they would need to use that for Mya to open her eyelids so they can properly do an exam on each eye, with the whole eye being open. He said he knows it looks scary but it will be OK, they put numbing drops in her eyes beforehand and well, as soon as they put the speculum in her eye (one flap goes underneath the top eyelid and the other goes underneath the bottom, google it, and then imagine that one an almost 2 month old. To them its normal standard procedure but to me, the mom, terrifying.) Mya did not like it, she cried the entire time, she held my hand the entire time, I tried to talk and sing to her, and I cried with her. If you are a mom, you know, nothing hurts more than seeing your child hurting. When one eye was done, she squeezed into me so tight and stopped crying, but there was another eye we had to do still. The same thing happened with the other eye. The doctor kept apologizing to me and thanking me for my patience and I told him I am not sure why he is thanking me, I should be thanking him. But after everything was done, Mya was all better in my arms. He told me her eyes look good and healthy, both the front and back, she is a little far sighted but that is common for babies at this age. He said he does not feel the need for surgery now as there is no concern with the actual eyes. He said this is something we need to keep monitoring closely because that can of course change. His hope is to wait to have her first surgery until she turns 1, maybe even 2 or 3 if her eyes keep progressing and developing the way they are supposed to. We go back in 6 weeks. In October we will have 3 doctors appts again. 

I felt really good and happy with everyone there, and felt again, a sense of hope and MAYBE just MAYBE she will be able to open them more on her own, as we see at home she is progressing and paying attention more, keeping her eyes open for longer, etc. Again, the longer you wait for the surgery, the scar tissue is stronger and the surgery is more accurate and precise. But that all depends on Mya and her situation, as every child is different. 

Friday came and this was our last appt of the week, we went back to Luries to see the same doctor again. He let me know that the eye specialist convinced him he needed to see Mya sooner then what he originally said (3 months) he took pictures of her and examined her while laying down but also had me put her in the sitting up position. He showed me a picture of her and said the concerning thing to him is that the amount she currently opens her eyes, you cannot see her pupil and that is blocking her from being able to see. He said this part can cause damage to her vision. He suggested we move ahead with scheduling the surgery but to message him within the month to see how she is doing at home and if there is effort and improvement, he will then feel comfortable postponing. 

Speaking of surgery, he went over how it is done, where the incisions are made, it is a sling surgery, so they insert a sling to raise her lid. The part I did not know and he said this is the weird part and will take time getting used to, is that her eyes will then be open all of the time, even when she sleeps. It is an outpatient procedure, followed by eye creams, drops, and antibiotics. He let me know of all of the risks, but said the risks of the surgery are not as big as the risks of her losing her vision. 

So, I left there more confused than ever. I am at a point where we need to chose with doctors at which hospital we want to continue to see. Do we wait as her vision is perfect now and keep monitoring it until she gets older so her surgery is more accurate? Do we schedule surgery now? There is no right or wrong. I honestly do not know. Either way, the doctor at Luries told me the surgery would not be scheduled until about 1-3 months from today, so in a little over a month we go back to UIC and get her checked up again so that will give us a better indication of how she is progressing and will speak to them more about the next steps at that point. Either way, we just wait right now. 

If I were to make a decision today, I would choose UIC. The doctors cared more, told us all of our options, discussed what would be best, are counting to want to see and monitor her, not just with her eyes but overall health (hence do the genetic testing so we can make sure if we need to discuss her ovaries or not too) and the doctor only at Luries only saw us sooner because the first eye specialist suggested it to him, otherwise he would not have seen us again until October. 

This whole week I have been connecting with other moms, joining BPES groups, to connect with other people who have children with this syndrome, or have it themselves. It is extremely heart warming to see what a happy and healthy life these beautiful kids are living, just with smaller eyes. Some had surgery as early as 6 weeks, some 3 months, some 1 year, some never. So it really depends on each child. Some have the type that affect ovaries, and we will cross that bridge when we get there, but, some freeze their eggs before 18 because in the ages of 18-20 is common for them to completely fail. 

If there is one thing I know I want for both of my kids future, is to really teach them confidence and acceptance. We know how some kids are nowadays, kids are mean, some for absolutely no reason. I want Mya to be proud of who she is, and know that she is beautiful EXACTLY the way God made her. She may never have “fully opened” eyes but that is OK. The main goal is for her to be able to SEE. That is a blessing and I thank God everyday that she can and that her eyes are healthy. 

I know Ali’s personality already, and I know she will defend her sister and stand by her side always. She has been the best sister ever to Mya, honestly. She wakes up saying “Mya”, looks for her everywhere, kisses her, hugs her, bring her bottles, pacifiers, bibs, etc. I cannot wait to watch their bond growing up, I know they will be the best of friends. 

I am raising strong girls here. I need them to know how amazing and strong they are and to never doubt that. The strength I already see in both of them is out of this world. I am seriously the luckiest mom to have them. I wish I could take all of any pain they ever have away from them. I just feel so incredibly blessed despite all of this, because I know God put us in this situation because he knows we can handle it. And we will. We are fighters and we will get there.

As of now it’s going to be a waiting game until the next check ups in October. I was told to continue taking videos and pictures for them (if only they knew who I am, I mean I only take thousands of pictures on a daily basis) and we will just keep praying for progress. I know ther