Our Journey with Microphthalmia

By Heidi S.

When I was a little girl, I fantasized about growing up, getting married and having children. In my mind I had the perfect family life all planned. I would have two boys and two girls.

As it turns out, I didn’t get married until I was 32 and my first child wasn’t born until I was 36. I had a beautiful baby girl and I named her Laura May. Three years later I gave birth to my equally beautiful son named Aaron Joshua. His dad wanted to call him “AJ” so we had to pick a first and a middle name that started with an “A” and a “J”.

All through my pregnancy for AJ I felt that something was very wrong. My husband told me later that as soon as he knew we were having a boy he also knew that something was going to be wrong. Oddly enough, we never told each other until after he was born.

We noticed right after AJ was born that one of his eyes didn’t open. Our family doctor checked it and said he thought it would be fine. It kept nagging at us though so we mentioned it again at his two-week check-up. The Doctor decided to send us to see a pediatric ophthalmologist just to make sure everything was okay.

We went the following week. Both my husband and I knew that something wasn’t right but I thought it was just the one eye so I had convinced myself that that was okay. As long as he still had one, he could see . When we got in to see the specialist he was very business like and wasn’t saying very much as he examined our son. My husband held him still in his lap and I sat in a chair in the corner of the room with tears streaming down my face. Then we heard these words, “Yup, he’s blind in one eye, probably blind in the other. He may have brain damage so you should get an MRI”. Just like that! Talk about a train slamming into a brick wall!

After that, I cried every night as I held AJ in my arms to feed him his bottle. I did this for about three months as I prayed to God to please let AJ be happy. I just couldn’t imagine at that time how he was ever going to be happy about anything.

Finally, I stopped and realized that feeling sorry for AJ and myself wasn’t going to help us at all and I started to accept the situation for what it was. I vowed not to treat him any differently and that I was going to do everything I could to make his life as normal as possible. The next thing I knew, we were making an appointment to see another pediatric ophthalmologist at Boston Children’s Hospital and having an MRI done in a few days. I remember my husband and I sitting at the end of the MRI machine praying for the entire hour that it took to do the test. After it was finished, they told us they needed to do it again because he moved too much the first time. So we sat and prayed for another hour. Results came back that AJ had microphthalmia in both eyes and no optic nerves. They told us he had no brain damage and we were extremely grateful for that.

At Boston Children’s they confirmed all of this and told us they would see us every six months for a year or so. In the mean time, we found out AJ needed to have a brain stem hearing test done and an ultra sound on his kidneys. Both came back normal. We went to see a geneticist and they took a blood sample from AJ but no one else in the family. They never got back to us and it took a year of hounding them just to find out they didn’t know anything. We decided not to pursue that for the time being and to wait until both kids were older.

At 2 1⁄2 AJ had an eye exam by a different doctor in Boston and this one suggested prosthetics. The one before said he didn’t need them. So we were referred to Jahrling Prosthetics, also in Boston, and they were wonderful! We had to have molds made in the hospital because AJ was too young to sit still for them. Our first set was clear and then we got the painted ones a couple of months later. WHAT A DIFFERENCE! It brought tears to our eyes. Up to that point in time, we had not noticed how much different AJ looked until we had that first set of shells put in. Now, we had to learn to put them in and take them out. This was one of the hardest things we had to do because AJ hated it when we did this. He has since been wearing shells for about 3 1⁄2 years and we have gotten quite used to taking them out and putting them in. AJ even sits still for them now.

A year later we saw a new intern at Boston Children’s and this one said he had studied this particular eye disease in England for one year. He asked about AJ’s growth and was astonished to find out we had not been referred to an Endocrinologist. You can guess what came next. We saw the Endocrinologist and he determined that AJ was on the low end of the growth chart for height and weight but as long as he was on the chart, he was not concerned. We go back once a year to keep track.

We have just finished up 3 years of public preschool where AJ had speech, occupational therapy, vision and physical therapy. AJ didn’t walk or talk much until he was close to 3 years old. He has developmental delays but is making steady progress everyday.

AJ IS A VERY HAPPY LITTLE BOY and loves to sing and play the piano. He has perfect pitch and can play most any song he hears right away! This may not be the fantasy life I had planned out for myself but it is the one God chose for me. I believe all children are a gift from God and I am honored to have my two wonderful children entrusted to my care.

 

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