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.
Lucie was born on 25th January 201x, the smallest of our 3 kids and covered in vernix. While getting her ready to feed for the first time, Lucie opened her eyes and looked up at me. “I think she has some vernix in her eye” I casually said to one of the midwives, thinking absolutely nothing of it, and got back to staring at my baby.
We were looking so forward to our 20 week gestational ultrasound, despite this being on the week we moved from far north Queensland to Melbourne! My partner had started a new job and was unable to attend the appointment, so I took mum. I was exhausted but excited before walking into the appointment. Half way through the scan the lady excused herself, saying "I'll be back in a minute", only to not return for 15 minutes. She popped her head into the room and said "Sorry for the delay, I am just waiting for the doctor".
At our 20 week pregnancy scan we were told our daughter had a possible cataract in her right eye. We were prepared for this, as apparently it wasn't a "big deal" and would mean a brief surgery and all would be well.
Alice was 11 days late and after a tricky birth we were so excited to finally have her with us, only to find out she had no red light reflex in both of her eyes. My midwife mentioned the words "blind" and "syndrome". As first-time parents this sent our minds spinning!!