Hunter’s my first child. We don’t have any family history of congenital cataracts on either side. Hunter just drew the short straw.
He was born with bilateral congenital cataracts. I noticed white dots in his pupils at one month of age, and we saw specialists straight away. We were sent to the children’s hospital where he was diagnosed. A month later he had the cataracts removed. His surgery went well and he started wearing contacts within a week after surgery. He had another surgery two months after the first to clear up some cloud scarring. He’s been doing well ever since. He wears RGP lenses, which we put in and take out daily.
Hunter’s my little trooper, handling it all with smiles and giggles.
Sammy was born in 2019. The perfect final piece to our family of 5.
I noticed within the first few days that there were tiny white dots in the centre of both of Sammy’s eyes. I brushed it aside and put it down to fatigue and over worry on my behalf.
Just before we were leaving the hospital the paediatrician came to do a final check of Sammy. She’d mentioned earlier that she had seen red eye reflex in one eye but Sammy was being ‘uncooperative’ with the other eye, so she just wanted to double check. Very quickly I sensed something was wrong. She spent a lot of time looking into his eyes and eventually took him out of the room to examine him further with the assistance of a midwife. She came back in and told me that she couldn’t find red eye reflex in either eye and that Sammy would need to be seen by a specialist asap. She sat with me and made the call to the ophthalmologist who agreed to see us the following day. We left the hospital with a diary full of appointments and heads swirling with questions.
We quickly learned that Sammy had cataracts in both eyes and he was monitored over the next few weeks to decide whether surgery was necessary. Eventually, at 8 weeks old, Sammy had surgery to remove the lenses in both his eyes.
Shortly after surgery we started our contact journey. To begin with it took the entire family, singing, dancing, flashy toys, whatever we could do to distract Sammy as we put his lenses in every morning and take them out every night. It literally used to take us hours and the amount of heartache it caused was huge but we knew we were doing it for the right reason and that Sammy would understand eventually. I can now get them in and out within seconds by myself but, at 19 months, he’s getting stronger and more resistant and I know things won’t always be this easy. As our amazing optometrist says this is a rollercoaster of a ride.
Sammy is an amazing little guy who is far more adventurous (and cheeky!) than his older brother and sister so he continually keeps us all on our toes. Nothing has held him back so far and I can’t imagine anything getting in his way in the future!
RJ entered this world quite dramatically in May 2020. It was a rough 22 hours for me (mum) and RJ but he came into this world happy and healthy.
We stayed in hospital overnight and the next day one of the doctors came to do an all over check of RJ. When it came to shining the torch in his little eyes, the doctor noticed something wasn’t right. He went to get another doctor to double check and they both agreed RJ had a “complete black out” in his right eye. They explained to us that RJ had no red reflex in that eye and further investigation would be needed.
Twelve days later we were taking RJ to the ophthalmologist clinic at the children’s hospital. During the COVID pandemic, only one parent was allowed in the room at a time. I took RJ in for the eye drops which dilated his eye, my poor boy screamed and cried and I couldn’t handle taking him in for the examination so dad did that part. When I saw the doctor come out into the waiting room to get me, I knew the news wouldn’t be good. I sat down with my husband and baby boy while the doctor told us RJ was born with a cataract in his right eye and of course the tears started. The surgeon came in to speak with us, but I barely took in anything she was saying other than our baby boy would need surgery.
At 8 weeks old, our boy had the surgery to remove the cataract/lens in his right eye and our journey officially began. I never knew there were so many different types of eye drops!
Soon after surgery we started seeing an optometrist for contact lenses (and glasses for back up) and started regular visits with the ophthalmology clinic.
At age 1, RJ now wears a contact lens and patches 6 hours a day... well, more like 3-4 hours a day now that he’s old enough to take the patch off himself.
RJ has had some complications since surgery. He reacted to the solution we were cleaning the contacts in, he has glaucoma (high pressures) which is currently managed with eye drops and his eye turns in. We recently made the decision to do the surgery to straighten his eye which is next up on our journey
We are so, so grateful to the doctor who picked up RJ’s eye the day after he was born. So many times, things like this can go missed.
It’s a hard journey and one that will be lifelong for our boy, but we will do the best we can and take it day by day.
Looking at RJ and seeing how happy he is all the time – you wouldn’t think he has been through so much!
At the end of April 2019, I sat and read all the stories on here about all the brave and wonderful cataract kids and parents. Now I’m writing one about our own experience, about our brave and wonderful Emily.
Emily surprised us arriving over 3 weeks early weighing in at 4.1kg after a fairly normal pregnancy. She spent 2 days in the special care nursery due to jaundice but was otherwise a beautiful and healthy little girl and came home at 5 days old.
Emily has always been a happy baby and enjoyed watching her older brother play around her until she was old enough to roll after him and join in. When Emily was 4-5 months old I started to notice her right eye was a little lazy. However, no one else had noticed as it was ever so slight. At our 6-month maternal health nurse appointment I mentioned it to the nurse who said I could get a referral from Emily’s GP to see an ophthalmologist or wait it out as commonly lazy eyes would correct themselves by 12 months of age. [Editor’s note: this advice is incorrect. A lazy eye after the first few weeks of age can indicate a problem and should be investigated immediately by a health professional]. I wasn’t waiting for eye correction so I made the first available appointment with her GP and the first available appointment with an ophthalmologist.
Appointment day came, and when the ophthalmologist said Emily has a juvenile cataract in her right eye I first asked ‘what’s that exactly?’ I knew it was something old people got, right..? When the ophthalmologist explained it to me I started to cry. We had another appointment with the ophthalmologist a few days later and also with an optometrist. Emily had surgery 8 days after diagnosis at 7 months of age. This marked the first day of our journey, the day our hearts were broken and from then on our patience would be tested, daily.
The aftercare, eye drops, eye drops, eye drops, appointments, a daily contact lens and the dreaded eye patching. In the beginning we felt so terrible, exhausted and sad but thankful all at the same time. Every contact insertion and removal, I would cry, Emily would cry, we all would cry. I wasn’t able to insert or remove Emily’s contact alone for a few months. Once I learnt to do this alone I was super proud and sometimes could do it with no fuss but sometimes with a lot of difficulty, even still now almost 2 years later. She has her own plunger that she uses to ‘take out’ her Dolly’s contacts, my contact, my husband’s, her brother and anyone else who may be around including the ophthalmologist at her check ups. Emily’s dolls all wear a patch and we are getting in her required patch hours on most days and seeing improvements over time.
This journey has challenged my husband and I but we are stronger than we thought we were and know that we made the right decision to try to save the vision in Emily’s eye. The daily worries and concerns will always remain but we have a perfectly healthy toddler who has never been held back by her aphakic eye. Emily amazes us at how brave and incredible she is to go about her day patched and we hope and pray that when the end of our patching journey comes along we have done all that we can to gain some vision in her aphakic eye.