Lucie's story

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. 

After seeing a registrar, ophthalmologist and eventually the head of ophthalmology at the hospital in the space of 24 hours, our sweet Lucie was diagnosed with not only a super dense cataract in her right eye, leaving her with no vision at all in that eye, she also had a cataract in her left eye that was allowing her some sight. On top of that, she had a condition called microphthalmia, which means her eyes are underdeveloped, with again her poor right eye being much worse. We were told she would need surgery on her right eye to remove the lens. The left eye would be left as she still had some sight and the risk of complications was so high due to her eyes' small size. The head of ophthalmology told us that the surgery was going to be tricky and she wasn’t optimistic but she wanted to try. We were unsure what the point was if the professionals weren’t hopeful, but we agreed to the surgery. While waiting to hear about a surgery date, Lucie underwent blood tests, extra hearing tests, and an MRI to try and figure out a cause and if there were any other conditions. Thankfully, all were fine. It would later be determined that due to no family history on either side, it was most likely a gene mutation that occurred while I was pregnant, and Lucie has a 50/50 chance of passing it onto her children.

Lucie was booked for surgery on 9th March. On the Monday beforehand, I received a call to say our surgeon had to go on leave suddenly, and so the surgery was cancelled and we would get a phone call within 2 weeks to reschedule. This caused instant panic as Lucie was only a few days shy of 7 weeks which is when the surgery is best done. However within 5 minutes I had another call to say that our surgeon had organised for us to be seen by the Head of Ophthalmology for the state, before she left. We immediately headed up to another hospital to be seen, where we were told that not only would Lucie have surgery on her right the next day (Tuesday), they were pretty sure her left eye would need the lens removed but would confirm that after her first surgery.

We were nervous about meeting new doctors so close to surgery, but we now feel it was meant to be, Lucie was operated on by the best and we are still under their care. We're lucky enough to have a lovely bond with one of her surgeons especially, which is super comforting.

The surgery was due to take around 1 - 1.5 hours, we waited close to 3.5 hours before we heard anything. Lucie’s cataract surgery was a very tricky surgery and was one of the longest our surgeons had done (and still is to this day). As expected, Lucie was booked in on the Thursday to have her left lens removed which was thankfully a much simpler surgery. After almost a week in hospital, we headed home to continue administering many different drops into her eyes starting every hour, and slowly getting less over time.

Two weeks later we started the contacts journey which was emotional and challenging to say the least. It still is now sometimes but with the help of Lucie’s amazing optometrist, we are managing. Quite often in the early days, it would take my husband, our 2 older children and myself to restrain, distract, shine a light and remove the contacts. It always ended in tears, and not just from Lucie. Only now, 2.5 years in, have I managed to find a way to keep Lucie calm and still (most of the time) so I can remove her contacts. 

Lucie went on to develop glaucoma in her right eye which we are managing with drops after a surgery to insert drains in her eye didn't work due to her eye being oddly shaped. We have patched on and off, and at the moment are using atropine drops rather than patches as Lucie would rip the patches off immediately no matter what I tried.

Although we are not 100% sure what her vision is, Lucie does not let anything get in her way, she is the cheekiest, funniest little lady. Her vision is normal to her, she hasn't known any different. Things are by no means always easy, we all still have our moments of feeling utterly devastated, deflated and wondering “why Lucie”. Lucie will no doubt have these moments later in life too, but she has already shown how strong and resilient she is, more than us most of the time. And she has an amazing older sister and brother who would do anything for her, just as her Daddy and I would.