Congenital Cataracts

I get a lot of questions about Lanie’s eyes. There are the standard questions, like:
Do you have to take her contacts out every night?  
Why do you have to wait so long to get her implants?
Is it hard to get the contacts in her eyes?

And then there are other questions that people seem almost uncomfortable to ask, like:
Will she be able to live a normal life?  
Will she eventually go blind?  

I also realized that while there is information on congenital (pediatric) bilateral cataracts on the internet, there isn’t all that much so I’m going to add just a bit of my experience to maybe help others in our situation.

Here is a rundown of what happened with Lanie and some answers to questions we had in the beginning, as well as answers to questions we’ve been asked.

How we found out:
When we learned of Lanie’s eye condition I was pretty upset. We’d already been through so much, and it felt like we were coming to the end of all the questions about the possibly serious, life altering issues with her heart, her brain, her stomach, her esophagus, her thyroid… Her eyes weren’t even on my radar.  Yes, the pediatrician at the hospital when she was born recommended that I consult a pediatric eye doctor about a possible issue with her left eye.  

Probably nothing.

But when Lanie was 4 weeks old we found out that she had very dense bilateral congenital cataracts (a clouding of the lenses in both eyes presented at birth) essentially rendering her blind.

What happened after we found out:
We were told her case was urgent.  Your brain learns to see by seeing, if that makes any sense.  The easiest way to explain this is if there is nothing to see, your brain will eventually turn your eyes off.  This can happen as early as 3 or 4 months.  Because of this Lanie was very quickly scheduled for an ultrasound to rule out cancer, and underwent surgery to remove one lens the next week, then the other two weeks after. Both operations went smoothly and we were home before 10am. She never seemed to be in pain but didn’t sleep much the day after her both surgeries, and then slept all day on second day after both surgeries.   There were 7 weeks of eye drops, at one point 12 a day but they didn’t seem to bother her much, and many visits to the eye doctor.  

Who performed her surgery?
Only the best pediatric ophthalmologist ever. And it turns out he’s the only pediatric ophthalmologist within 3 hours of Pensacola so it was really a win-win.  Dr. Mickler and his staff at the Eye Institute here were amazing.  Can’t say enough good things about these people.  They have treated Lanie like she was their only patient and Dr. Mickler even gave us his cell number after her first surgery because I had questions about how her eye was healing.  I definitely recommend them if you ever need a pediatric ophthalmologist. Here’s to hoping you don’t though.

What now?
She is now what is called aphakic, meaning without a lens, in both eyes and she will be until she’s old enough to have lens implants.  Your lens is what disperses light and helps you focus.  Without it her vision is just lights, fuzzy shapes, and colors.  Her uncorrected vision in each eye is +21.5.  This is why Lanie has to wear contacts or glasses all the time.  She will likely see her ophthalmologist a few times a year, and her optometrist once a year but that’s it really until she is ready for her implants, or a complication arises.  

Contacts for babies?
Yes. Her contacts are Bausch + Lomb Silsofts and they are kind of soft/hard hybrid lenses that can be worn for up to 30 days.  I take them out of her eyes weekly and clean them overnight.  This has not proven to be as difficult as I thought, and it only takes me a minute or two to get them out of her eyes, and less than 10 minutes to get them back in.  I’ll try to get a video of this soon as I think it could be helpful to others.  I am curious if this will get more difficult as she grows.  Will she become uncooperative? Or will it always be this easy because she’ll be used to it.  I guess we’ll see.  
Her contacts are thick and I can easily see them in her eyes.  This is good because when one popped out the other day I knew quickly.  My heart stopped briefly but I found the $200 lens in her cosleeper almost immediately.

What about her glasses?
They are Miraflex glasses and are very bendy and have the thickest lenses. She strongly dislikes them but they’re completely adorable. Whenever I take her contacts out to clean them overnight I make her wear her glasses for a little while to help her get used to them. At first I could only get her to keep them on for a minute or two but we’re up to about 10 minutes now before she suddenly gets angry and screams and reaches up to yank them off her face.  My goal is for her to wear them all day for one day a week so we can leave her contacts out for 24 hours to let her eyes breath.  

Insurance:
My husband is in the Navy and after about 6 phone calls and a small bit of confusion Tricare did cover both her glasses and her contacts which was a combined cost of about $700. If you are in my situation and are having trouble getting Tricare to cover these you can email me or leave a comment and I can let you know the steps we went through to get them paid for. Tricare will want an explanation from your child’s ophthalmologist as to why your baby needs both contacts and glasses. They won’t be able to understand the explanation though, and that will likely work in your favor.  
Contacts for aphakia are the only contacts that Tricare will cover.  

Why does she have to wait so long for her implants?
Studies have shown that the longer we wait to implant a child’s intraocular lens, the fewer complications and follow up surgeries will be necessary.  

Are other complications expected?
There will always be concerns for glaucoma as it is fairly common after cataract removal, which could lead to blindness if not caught early. Her ophthalmologist is already paying very close attention and Lanie’s first glaucoma test will be in just two months, when she is 6 months old.  Also, she’s got a mild nystagmus in both eyes (involuntary eye movement) but it seems to be decreasing and I’m hoping that there aren’t patches in her future.  I’ve read that most children with her condition end up having to wear patches for years to strengthen their eyes. Not looking forward to that.

Will Lanie be able to live a normal life?
As normal as a life can be with 9 older siblings. She’ll be able to read and learn and explore and play sports and get into trouble and eat cookies just like any other kid.  She’ll likely always need glasses or contacts, even after her implants, but her life should be as normal as any other kid who wears glasses.  

How do you know that she really needs glasses or contacts?
Cataracts aren’t one of those things that take a lot of guess work to figure out.  It’s not like deciding whether your child is intolerant to gluten or dairy.  You can visually see what is wrong with the eye.  Even an untrained person can spot a dense cataract with just a little direction on what to look for. Pair that with her eye doctor’s understanding of how the eye works without a lens and it is obvious that she needed help to see.

Can you tell a difference in how she sees now that she has corrective lenses?
Absolutely.  We saw a small, but definite difference immediately and it’s only gotten better with each week that’s gone by.  She’s holding her head up more in an effort to interact, she’s smiling in response to us and laughing and cooing.  She’s also paying much more attention to sounds – which I thought was interesting.  When a baby is born blind they don’t associate sound with anything, it’s just noise.  Now that she can see she is beginning to link a sound with what is producing the sound like when Rabbit is talking she’ll often strain her neck to try to see him. It’s fun to watch her figure things out.
While she appears very curious about toys and such, she isn’t reaching for them very much yet. This bugs me a little but I have to remember that she is playing catchup and most babies have had normal vision for more than two months longer than she has at this point.  

What causes congenital cataracts?
There are a couple reasons a child can be born with congenital cataracts.  They can be genetic, passed down from parent to child.  They can be from heavy alcohol and drug use by the pregnant mother.  There could be no discernible reason for them – they just happen.  Or they can be a part of another disorder like a trisomy, which is most likely the cause of Lanie’s cataracts.

Did you try any home remedies before you opted for surgery?
While I am not against homeopathic remedies by any means, there have been no proven herbs, vitamins, or diets that will cure a baby of their congenital cataracts.  And being that it is urgent to get these suckers removed to keep the brain from turning the vision off, I didn’t feel it was in my child’s best interest to try something other than what was already known for sure.  It did make me uncomfortable that her lenses had to be removed, but in the end I am absolutely certain that surgery was the best decision.  I didn’t have a moments hesitation and not an inkling of regret.    

I’ll be adding and updating as time goes by and as we learn more through this indefinite experience.  In the mean time, please comment or contact us with any questions you have about Lanie, her eyes, Downs, homeschooling, adoption from foster care, youth football, how to find gray paint that isn’t purple, how not to wash ink into your brand new work shirt that you just got after starting your brand new job, where is the other shoe, and anything else you think I might know anything about but probably don’t.