Elise’s doctors made a request a long time ago for a video of Elise inserting her prosthesis to show other young patients who have yet to undergo enucleation. The prosthesis isn’t supposed to be removed and inserted regularly, because it will cause her lower eyelid to weaken. If it’s too weak, it won’t be able to keep her prosthesis in place, so obviously I didn’t keep removing it for her to practice. We mostly waited.
Someday last week, it fell out when she rubbed it so I asked if she’d like to try fitting it in herself. In any case, it’s a skill she needs to learn.I’m proud of her positive attitude and bright personality. I don’t think it was passed down from either of us. I promptly sent the video to her doctors and gave them the permission to show it to their patients. Mission Accomplished.
Apparently, some of them visit my blog to find out more about retinoblastoma and enucleation. Honestly speaking, it’s not profitable and I post more on IG now, but I know that many parents and patients have found encouragement through my posts on the blog so I’ll try to keep it hosted or export all the content to a free site. I’m glad that we’re at least making a positive contribution to society in this aspect.
We’d wanted to get Elise’s prosthetic eye done sooner, but the plans were postponed because of a “bubble” which hadn’t completely healed which would affect the molding of the ocular prosthesis. Well, after 3 consecutive days at the Ocular Prosthesis department (just a small room located inside the Dermatology clinic), Elise got her new eye! As it is made of medical grade plastic acrylic, it obviously does not have the capability of enabling her to see through it – it is purely for aesthetic purposes. Current technology hasn’t yet advanced to the stage where they can make the fake eye send signals to the brain to process it. Maybe in a few more decades, if we haven’t utterly destroyed the world by then with our wasteful practices.
My husband feels extremely guilty about not insisting on getting her checked when we first noticed her lazy eye and tells Elise often that he will get a seeing eye implanted for her when she turns 30. Let’s see! The ocularist says this should be able to last her for the next 2 to 3 years, after which we’ll need to create another one again.
The moment we got it fitted, I sent photos to the in-laws, who were exhilarated. According to my husband, my brother-in-law cried tears of joy. They’ll get to see her looking like nothing ever happened when we visit next month. The prosthetic eye was entirely customised, which explains the price (S$1,500). Since prostheses are not considered a necessary expense, it’s neither covered by insurance or subsidy. For something like this that affects her appearance and self-confidence, we’ll have to pay even if it costs $5,000 or $10,000.
On the left is how a prosthetic eye looks like. Everything is handpainted. On the right is a plastic conformer with black iris that Elise used up till yesterday. In most hospitals, clear plastic conformers are used. Without the iris, the redness of the eye muscle can be clearly seen and it affects caregivers and others psychologically. I turned away when the ocularist removed her conformer to make adjustments. I did glance over once and saw the pinkish patch where her eye used to be. The pinkish patch is actually her eye muscle, stitched together after her eyeball was removed and replaced with a plastic orbital implant.
Another reason why we had to create the prosthetic eye instead of relying on the conformer alone was because the conformer is convex and hollow on the inside whilst the prosthetic eye is carefully molded according to the individual. Using the conformer long term may result in sagging and possible deformation of the face for growing children. The prosthetic eye appears normal in photos but in real life, it becomes easier to identify as the “pupil” will not be able to move as freely as the real eye.
We met some neighbours at the void deck on our way home and they said it looked much better than the conformer. With the conformer, we did get questions from curious strangers who asked if she had a “red eye”. It was tiring having to repeat ourselves. Luckily, she is still at the age where she cares more about whether she gets to go downstairs to play than how she looks like, and we haven’t met nasty people or children who taunted or made fun of her.
It’s been a long 5 months.
The day she had her right eye and the tumour removed.
A few days before fitting the prosthetic eye. The in-between stage after the dressing was removed and before her bruise went away is too saddening to post. The bruise made her right “eye” appear significantly lower than the left 🙁