Congenital Cataracts

That Time We Became a Mac Family

When Lolo (our youngest) was 2 months old he and I set off to our two month well baby check. I was confident in him being well, he was gaining weight without question, he was alert and happy. Life was good! As with all well baby checks, the doctor came in and began his quick once over but then continued to check his eyes. Over and over again. Right eye then back to the left, lather, rinse, repeat. What was only minutes if not seconds felt like it went on for hours. After what felt like an eternity the doctor told me that little Lolo had a cataract. The doctor explained that Lolo would be referred to the local children’s hospital to see a specialist. I left feeling terrified of what was to come for Lolo and angry at myself for not knowing that my baby was completely blind in one eye. It felt like it was something a Mother should know and yet there were no telling signs. 

After a couple moths of waiting we met Dr S, the man who was going to save Lolo’s sight and his side kick Christine. They did a quick examination and confirmed that Lolo did indeed have a cataract but he wanted to take a better look to see what extent it was blocking his vision. Dr S put dilating drops in and told us to go get a coffee and come back in 20 minutes. Feeling heartbroken and overwhelmed we headed to the lobby for a coffee and to wander the gift shop. While in the gift shop we saw a little boy (around 4-5) in a wheel chair who had obviously had recent surgery to remove multiple limbs. In that moment it took all I could to not fall to the ground crying. How could I have been so selfish to have been heartbroken when here so was literally surrounded by kids who were fighting for their lives. It was in that moment I decided I would do what ever I could to support this hospital.  Eventually, we returned to Dr. S and after checking Lolo’s eye again he confirmed that Lolo did indeed have a cataract completely blocking him from seeing from his left eye and that he would need surgery to remove it if we wanted him to ever have sight in his left eye. Dr S was honest in saying that the surgery was not without risks. Having eye surgery as an infant meant a 100% chance of having glaucoma at some point in his life time. Not doing the surgery meant no sight in his left eye ever. Delaying the surgery meant less chance that he will develop sight in his left eye because his brain was not wiring itself to see with two eyes. No options that were great or easy. How do you choose to essentialy give your kid glaucoma?? How do you choose to knowingly allow your child to grow up blind in one eye? Dr S told us to go home and think about it and come back in a couple of weeks but that he would put Lolo’s name on the wait list for surgery but that we were free to take his name off at any point.

We went home and researched and researched and researched. Two weeks later we were in his office with pages of questions. Dr S being the great man that he is sat with us and answered every single one and when we ran out of questions he patiently asked if there were any more questions or concerns. After having our questions answered we decided to go ahead with the surgery. We were told that we would be contacted with a surgery date as well as a pre-op date that would include a check in with Dr S so he could develop his plan for the surgery.  We left that day a ball of nerves, certain yet uncertain we were making the right decision, wading into the waters of the unknown.