I became a mother at an early age. At the time I knew nothing about motherhood and how much compassion it takes to raise a child. It wasn’t easy for me either: my pregnancy was complicated by preeclampsia, among other health issues.
My life became more difficult when I learned that my firstborn child, whom I had longed to hold in my hands for so many years, was born with a congenital cataract. My story is being shared in hopes of shedding light on the condition and offering support to other families who may have a child diagnosed.
What is congenital cataract?
Congenital cataracts are cloudy lenses in the baby’s eye that occur before birth or during the first year of their life. This condition occurs in only 1 to 3 children out of every 10,000. The pediatrician diagnosed our son shortly after his birth, when he noticed a cloudy or white spot in the pupil. Our pediatrician referred us to a ophthalmologist for a definitive diagnosis. Our son’s congenital catapharenia was detected early and we could begin treatment immediately.
We were fortunate that our son was diagnosed right away after his birth. Congenital cataracts must be detected within the first six weeks in order to prevent vision loss in the eye affected. Our pediatrician was very helpful in this regard. We did not notice the cloudy eye in our son, but I recommend that every parent check their baby’s eyes for cloudiness. Ask your doctor to screen specifically for this condition.
Although I vaguely knew the term “congenital catastrophism”, I did not know the treatment methods.
What is the treatment for congenital cataracts?
First, the cloudy lens is removed through surgery. The next step is to heal the eye and insert a permanent or temporary lens. Since then, my son has been wearing a lens.
When there is constant competition and the brain prefers to use the healthy or affected eye, the struggle begins. Eye patches or covering the healthy eye may help strengthen the affected one.
Untreated cataracts can cause a child to lose their vision. Treatment is vital to the health of a child.
Life after my son’s diagnosis
We have seen our son go through many things, from using box after box to find lost contact lenses, to getting new glasses and eye procedures. He is now a healthy, intelligent, kind and thoughtful 6-year-old. We are making progress now that he has grown older. We are grateful that he is a good listener and follows his ophthalmologist’s advice.
Everyday I hug him tight, thinking about how scared and uncertain I had been when he was born. He has proven all my fears wrong and is such a bright and exceptional little boy! Teachers and parents often tell me that he’s funny and his mind is working in a beautiful way. All of this makes him seem so much more than just his diagnosis. To be honest, we’ve forgotten about the difficult moments.
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Parents of children with congenital lenses can benefit from these 5 tips.
- Take it easy on your child
It has happened countless times that I was so harsh on my child and myself about his treatment. The eye patches can be uncomfortable for children, but eventually they become accustomed to them. I remember that his ophthalmologist told us it would get easier. It is okay if he doesn’t want the patch on, as I don’t want him to feel uncomfortable. I am concerned about his comfort, even though we are making progress.
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- Take proactive measures
Children with congenital (or acquired) cataracts have no depth perception and are more likely than others to make mistakes in calculating distance and trip or fall. But I have never had to stop my child from doing anything because of his diagnosis. He has taken karate, soccer and swimming classes without incident. When I start a new activity, it is important to inform instructors of the sensitive nature of his eye. This will help them ensure that he plays safely. You can also inform parents and children during playdates about the sensitivity of your child’s eyes to raise awareness and protect them.
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- When you need help, ask for it
Don’t hesitate to ask for additional support. Every year, I am very grateful to the teachers who patch my son’s eye at school. Teachers are amazing. - Not everyone will understand.
I’m a mom and I’m very protective of my son’s patch. I don’t ever want anyone to make him feel less than or different. Adults may not know what a congenital catachromat is, and think that it’s just an issue with their eyesight. But it is so much more. It’s fine to not answer questions. If someone asks about my son’s eye patch, he will tell them that he needs an eye patch to strengthen his eye.
We have encouraged him to play the role of a pirate by wearing an eye patch. This can be a great way to boost his self-confidence. Even his cousins and close friends have asked to wear eye patches with him, because they thought it looked cool.
- Your child needs you as a parent
You can also help your child to recognize and appreciate their strengths. I am a safe space for my son, so he often seeks out hugs from me. I want my son to feel that presence as he becomes a young confident man who embraces himself.