A Lesson on Looks

Elise has had her prosthetic eye in for slightly less than a year. After her follow-up in January, we were told that the tissue below her prosthetic eye had eroded due to abrasion and insufficient moisture. I was supposed to put in eyedrops for her as many times a day as possible. She would run away from me whenever I tried to touch her eye and I failed to fulfil this necessary criteria. 

It wasn’t a wound that would heal by itself, thus Dr Ganga suggested that an operation be done to cover up the gap. He warned that there might be a need to do a skin graft off her back if the donor tissue wasn’t enough to cover the gap. I agreed almost immediately because the hole would only continue getting larger with repeated contact from movement. The boring name for the procedure Elise underwent is “Scleral Patch Graft for Exposed Orbital Implant”. Don’t Google that if you’re squeamish. 

The operation went well and the donor tissue was enough to patch up the 5mm gap in her eye socket. We spent the next two nights in a 8-bedder ward. She vomited and ran a fever, yet she refused to take Paracetamol orally.  The Paracetamol was also to help her combat the pain from the operation. Eventually, the nurses gave her Paracetamol via intravenous drip. -_- 

The worst part was when the nurses tried to change her eye dressing. It was a necessary yet traumatic experience for her as the wound was fresh and her entire eyelid was stitched shut and swollen. To prevent her from struggling, we swaddled her with a bedsheet. My dad held her legs down. A nurse held her head down while another tried to wipe her eyelid and apply medicine.

“No, no, no, no! Go away! Go away! Help! 엄마! 公公!No, no, go away! 아빠!”, she tried all she could to get herself out of that situation by pleading with us to stop, calling for each of us to save her. She gripped my hand for support. The hand which failed to rescue her from fear. It was impossible to adhere the tape for the eye shield onto Elise’s face which was dripping with perspiration and tears. 🙁

For about 10 days after the operation, her eyelid remained stitched shut to aid wound healing. At its worst state, it looked like someone socked her in the eye. It was all red and puffy like a goldfish’s. For a breather, we brought her down to the playground opposite our house. She enjoyed herself but there were a group of children aged about 8 to 10 years who were extremely curious about her appearance and started gossiping. They even went straight up to scrutinise her eye. URGHHHH. Even after I told them she’d injured her eye.

She felt rather self-conscious and down about it. My dad decided that there was nothing to be ashamed or embarrassed about and that night, we brought her down for a walk. Another group of children. This time, they accepted the explanation, included her in their games and she healed a little inside, only to get it broken the next evening when she spotted a friend she frequently hangs out with. She called out for her friend, who saw that her eye wasn’t quite the same and hid behind her helper. Elise tried to engage her, showing a toy she had, but that failed too. I couldn’t take it and grabbed her away to play with something else. Secondhand heartbreak. 🙁 

Fun fact: Some adults can be idiots. At the mall, a stranger asked us, “Why is her eye like that?”, only to be shushed by his female counterpart who had about a hundred times more EQ than him. Some people think through their asses and talk without a filter. I snapped back, “关你屁事!(lit. None of your business!)“ but he was too far gone. At the bus interchange, a helpful uncle chimed in with his useless advice, “There’s a temple near Sheng Shiong, you should bring her there.” By that time, my social meter was reduced to negative and whatever I replied would have possibly sparked a physical fight. 

Two days ago, she had her stitches removed. It still looks like she has her eye closed because the swell has yet to subside and there’s discharge which constantly leaks from the wound and has to be cleaned. The wound needs about 6 weeks to heal so we can’t slot in her fake eye just yet. It’s a conformer like what she had last year. Post-op care has been a struggle (holding down her limbs, holding her head in place, cleaning in between her tightly clamped eyelid, prying open the eyelid to drip in medicine). Just this evening, her conformer popped out as I was cleaning it and we decided to leave it until tomorrow morning. 

At her teacher’s encouragement, we sent her back to school today! Her classmates are still too young to care about appearance. It’ll be a while before she looks like this again, but soon! The sad lesson is that how you look determines how you are treated in the world. 

Elise’s New Eye

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.

(L) Prosthetic eye (just a sample, not Elise’s), (R) Plastic conformer with iris

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 🙁

To better days ahead!

The Rain

It is never easy sending your child to the operating theatre. Though it is just going to be a simple examination under anesthesia (EUA) and mold creation for her prosthetic eye, she will still have to undergo General Anesthesia. This will be her third time in 3 months. 🙁 I’ve asked both the surgeons if the procedure can be done under sedation but they told me that sedation would not be sufficient as the process of creating the mold is uncomfortable. It would be more traumatising for her if she wakes up halfway instead.

Tomorrow’s procedure is considered low-risk so I hope everything goes smoothly. I still remember when the nurses were waiting for her to recover from anesthesia in the holding area after her enucleation. Her non-eye was covered with an eye patch and blood was seeping through. 🙁 She likely will not need to be warded tomorrow. After Chinese New Year, we will need to visit the hospital for 3 consecutive days for the construction and fitting of her prosthetic eye. On the first day, they will see if the mold fits. On the second day, they will commence on hand painting the acrylic customised eye. On the third day, the eye will be ready and we’ll be taught how to insert and maintain the prosthesis.

As with every procedure requiring anesthesia, she will need to fast. The deadline is 12 midnight for solids and all sorts of milk and 4 am for water, glucose water or honey water. She’s currently knocked out but I managed to feed her some milk. She won’t be able to consume anything until after the operation ends. Hopefully, it won’t be too taxing for her. We have the earliest slot so we’ll need to wake up extra early to cab over.

It has been raining heavily for days on end. The laundry takes forever to air dry and we have been confined to the neighbourhood for the past week. It’s like free air conditioning and the weather is the closest it gets to “winter” in Singapore. The downside is that the coldness just makes me want to curl up under the comforter and hibernate the day away. There’s also the immense boredom of being cooped up at home…

Elise turned 15 months a few days ago. Ever since she was born, breast milk has been her main source of milk. She was nursed exclusively for 6 months and has been latching daily up till now. I’m not sure if the problem lies with my supply, but I find myself becoming increasingly annoyed when she wakes up to latch in the middle of the night. She’ll climb over me, change sides, switch positions all while chomping down onto my boob, refusing to let go until I pry open her mouth with my fingers. I chided her and commanded her to “stop it” and it wasn’t a good feeling for either of us.

That’s why I made her a bottle of formula milk this evening from a sample tin of Gain IQ which I received earlier. She drank all 120ml of it in one go. I still believe that breast milk is best as it’s customised for the child but knowing that she is receptive to formula as well as a range of other types of milk (oat milk, fresh milk, thawed frozen breast milk) is comforting because it provides a back-up solution for when I need to rest. Formula is overpriced and it doesn’t make sense to rely entirely on it when it’s not essential for growth. Besides, she has such a voracious appetite, her nutrient requirements can easily be met through solids. Normally, she doesn’t pay much attention to her father but when he is eating, she’ll toddle up to him and act coy. She’ll sit on his lap and say “AH-MM!!!”.

I’m quite sure I’ll feel bittersweet when she weans but such is life. For every beginning, there will be an end.