What to know about congenital cataracts

I embraced motherhood at a young age. At the time, I had zero knowledge about being a mother and the amount of compassion child rearing takes. And I didn’t have an easy go of it: My pregnancy was complicated with preeclampsia and other health concerns.

Life became even more serious when my firstborn, whom I was yearning to hold in my arms for so long, was diagnosed with a congenital cataract. Now, I’m sharing my story in the hopes that it sheds light on this condition and offers support for other families whose child may be diagnosed.  

What are congenital cataracts?

A congenital cataract is a condition that happens before birth or in a baby’s first year of life in which the lens of the eye is cloudy, when it should be clear. The condition is somewhat rare, occurring in 1 to 3 out of 10,000 children. Our son was diagnosed right after he was born, when the pediatrician noticed a cloudy lens or whitish spot in the eye. The pediatrician then referred us to an ophthalmologist to give a final diagnosis. Thankfully, our son’s congenital cataract was diagnosed early on and we were able to start treatment soon after. 

Since congenital cataracts need to be caught in the first 6 weeks to avoid losing vision in the affected eye, we were lucky that our son received a diagnosis right after birth. We have been very grateful to our pediatrician for this. While we did not notice our son’s cloudy eye, I would advise every parent to look closely at their newborn’s eyes and check for cloudiness and ask the doctors specifically to screen for this condition. 

Though I had vaguely heard of the medical term  “congenital cataract”, I was unaware of the treatment methods.

How are congenital cataracts treated?

The first step in congenital cataract treatment is the removal of the cloudy lens through surgery. Next step is healing and using either a temporary contact lens or inserting a permanent lens in the child’s eye. My son has since been wearing a contact lens.

The struggle begins when there is constant competition between the two eyes and the brain chooses to use the healthy eye more than the affected eye. Therefore, eye patching or covering of the healthy eye can be helpful to strengthen the affected eye.

It is important to note that, if left untreated, a child may never have vision in the cataract eye, which is why treatment is essential to a child’s health.  

Life after my son’s diagnosis

From using box after box of eye patches to finding lost contact lenses and getting new glasses prescriptions and eye procedures, we have been through a lot with our son, though he is now an intelligent, kind, thoughtful, loving, healthy 6-year-old. Now that he is older, he cooperates more and we are moving towards progress. We are thankful that he listens to and understands his ophthalmologist’s advice keenly and likes to follow up at home.

I hug him tightly everyday thinking how frightened and uncertain I was about his future when he was born and how he has proved all of my fears wrong by being such an exceptional, bright little boy! I often have teachers and other parents tell me how funny he is and how his mind works in beautiful ways. All of this makes me believe he is so much more than his diagnosis—and to be honest, he has outshined so much, we have forgotten the rough moments.

Related: After a 4-month NICU stay, I’m not the parent I thought I would be

5 tips for parents of children diagnosed with congenital cataracts—from a parent who has been there, too

1. Go easy on your little one

There have been countless times I have been so hard on myself and my child about his treatment. It is tough to eye patch a child because it makes them uncomfortable, but they get used to it—I remember his ophthalmologist telling us that it will get easier —and it did. There are many instances when he does not want to patch, which is OK, because I don’t want to make him feel uncomfortable. We are making progress, but his comfort is my priority.

Related: 3 ways ‘peaceful parenting’ helps us heal alongside our kids

2. Take proactive steps

Children with congenital cataract(s) have no depth perception in the treated eye and they are more likely to miscalculate distance and fall or trip. However, I’ve never needed to hold my child back from any activity due to his diagnosis. He has attended karate, swimming and soccer classes safely. At the start of any new activity, I make a point to mention to instructors about the sensitivity of his eye so they can help make sure he can play safely. Even during playdates, you can inform other parents or children about your child’s eye to create awareness and protect your little one. 

Related: My 5-year-old asked to go plant-based. This is what we learned

3. Ask for help when you need it

It’s also important to recognize that other adults can help your child when you can’t be there—don’t be afraid to ask for extra support. I’m very thankful to my son’s teachers every year who help him patch his eye while in school. Teachers are incredible. 

4. Recognize that not everyone will understand

As a mother, I am very protective about my son’s eye patch because I don’t want someone to make my little boy feel different or less than. Many adults do not understand what a congenital cataract is and they may think it is just a weak eyesight issue, when it is much more. People will ask questions—and it’s perfectly fine if you don’t want to offer an explanation. But if someone asks my son about his eye patch, he tells them he has an eye which needs to be strengthened with the help of an eye patch. 

To help boost his confidence, we have helped him portray himself as a pirate with an eye patch, which can be so fun for imaginative play. We have even seen cousins and friends ask to eye patch with him because they think it looks cool.

5. You are the parent your child needs

Most importantly, you can help your child recognize that they are more than their diagnosis and celebrate their many strengths. My son often comes to me for hugs because I provide him a safe place. I want him to feel my presence in all aspects of his life as he grows into a confident young man who embraces his whole self.