Our Story: Dealing with Primary Congenital Glaucoma at birth

I’ve never written about this.  Not in length anyways.  But, now that our 4yo daughter has to get her first pair of glasses, it all came rushing back to me.  Every emotion that I had to suppress, so that I could focus on her, was now consuming me and reducing me to tears two Saturdays ago.

Let me start from the beginning.   

I knew.  I knew the minute Miss Simone Malina Abernathy was handed to me after giving birth that something was wrong.  This was my first child and after being in labor for 28 hours, pushing for two hours and being told that if she didn’t come out on this last try, I would probably have to have a c-section, I was drained.  But I knew her eyes just didn’t look right.  Her left eye was bulging out of her eye socket and it was hazed over and you couldn’t see her pupil or iris.  It was like someone took out her eye and replaced it with a grey marble.  I kept thinking that maybe this is normal.  Maybe all the pushing put stress on her eye.  What did I know?  I’ve never given birth before.

The nurses started asking me questions:

Did you have any complications while you were pregnant?

Does your family have a history of any diseases?

 

They told me that they were getting the in-house pediatrician and when he came, I was asked the same questions again, probably even more that I can’t remember.  He let me know that she needed to see an eye doctor as soon as we were discharged.  They set up the appointment and exactly one week after she was born, I was headed to meet Dr. Gold.

At Birth.  See her left eye.

At Birth. See her left eye.

A week is a VERY LONG TIME to wait when you think that something is wrong with your newborn.  So I did what any parent would do, googled the shit out of  anything that I could find that described her eye condition.  It was hard.  I’m not a doctor.  I had no clue what to enter in the search field and started with just describing what her eye looked like.  I kept seeing medical sites and the words Primary Congenital Glaucoma, but it wasn’t until a came across a woman’s blog that I was convinced that this is what Simone had.

She had one child.  Then she gave birth to another baby, a boy who seemed normal at first.  Then in his first year, his eyes started to look like Simone’s.  By the time they took him to the eye doctor, his was diagnosed and it was bad.  I believe he ended up blind.  Then, she had a third baby, another son. And once again, in his first year, he developed it also.  This time they caught it early enough that after his surgeries, he wasn’t blind, but had to wear glasses and be in special classes at school because of his deteriorated vision.  I wish I could find that woman’s blog today and thank her.  Thank her for being the only non-medical source of information that I could find.  To thank her for sharing her story.

I thought I was prepared.  I thought that I knew what I was walking into that day at Dr. Gold’s office.  I should have brought someone else with me.  I should have known that only one week after giving birth that my hormones would be all over the place and no matter how much I had read on the internet, I was not prepared.  I had to sit in the chair, holding my baby, while a nurse held her arms down because she was screaming and crying, so that the doctor could try to look into her eyes.  I was trying to be brave.  No tears.  No crying.  I remember the nurse and the doctor telling me that he needed to find the other doctor in his practice.  I knew that wasn’t a good sign.  They both returned, looked at her eyes again and just left the room.  I was still being brave.  I was still not crying.  It wasn’t until Dr. Gold return again and told me that Simone did have Primary Congenital Glaucoma.  That she would need eye surgery immediately and that he was already in contact with Bascom Palmer in Miami.  It was blur.  I was not being brave anymore.  The tears were streaming down my face as he went through all the scenarios regarding her eye condition.

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Trying to absorb information was difficult.  There were facts:  1 in 10,000 kids in the US are diagnosed with PCG.  Within that, only 25% are detected at birth and 80% of the time it’s in males.  So, rare.  It is the the number 2 reason children go blind.  Surgery on an infant is complicated and hers was scheduled for November 4, 2009, when she was just 5 weeks old.

We arrived at Bascom Palmer, met with the amazing staff and the AMAZING Dr. Elizabeth Hodapp.  She explained what they were going to do: put her under, examine her eyes and preform a Trabeculotomy.  They let me dress in scrubs and take Simone back to the anesthesia room and walk her into the surgery room.  I was being brave.  I was not shedding tears.

There are no words to explain what it feels like to see your child like this and after I left her in the surgery room.  I was not brave.  I was shedding tears.

Her, right after surgery, going into recovery.

Her, right after surgery, going into recovery.

I don’t remember how long she was back there, but I remember them taking us to meet her when they transferred her to recovery.  That is when I lost it.  I cried and cried and cried some more.  We had to sit with the doctor and listen to her tells us that the surgery went very well.  They had a little difficulty with her left eye, which was the worse of the two, and there is a scar if you look close enough.  We were also told that she would have to have another eye surgery by age two and that she would constantly have to have her pressure monitored in her eyes or else she would go blind.  Dr. Hodapp went on the explain that she would probably need infant glasses, that we would probably have to patch her eyes (put a patch on eye for a specific amount of time and then the other to help with her vision), that she could develop a lazy eye and that this is normally a hereditary condition and if we had another child, more than likely, they would have it too.

Well, it’s 4 1/2 years later and we are EXTRAORDINARILY lucky.  She has gone under anesthesia to have her pressure checked  so many times that I’ve lost count.  But if I had to put a number on it maybe 9 or 10 times.  She has to go to the eye doctor every 3 months and now only has to go under anesthesia once a year.  She hasn’t needed another eye surgery.  She didn’t need infant glasses.  We didn’t have to patch her eyes. She never developed a lazy eye and we will never have another child.

2 months later, another check up.

2 months later, another check up.

 

Yet again

Yet again

 

Her latest one!

Her latest one!

 

Every eye doctor that she has seen in her 4 1/2 years, has marveled at our miracle.  And we do too.  We are so thankful that it was detected and treated quickly so that her complications were small.  If needing glasses at age 4 1/2 is her only issue to date, I’ll take it!

one pair she tried on

one pair she tried on

 

The pair I really like for her!

The pair I really like for her!

 

The red Hello Kitty ones she decided on getting!

The red Hello Kitty ones she decided on getting!

3 comments

    • ohsonikki says:

      Thank you. It’s tough, but we are so lucky. Her glasses are on their way and I’m trying to figure out how I’m going to get her to wear them all the time! lol!

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