Article from Australian TS Newsletter 2003
Kasey was 4yrs old and we were being asked to consider surgery again. Of course previous to this surgery decision there was never really any question or debate over the options. When Kasey was 12 days old it was very clear that she either have heart surgery or she would die. 12 days after her first heart surgery it was once again clear that she required further surgery to survive. There was never any doubt about whether or not to go ahead with the surgery, so the decision was relatively easy to make (waiting for her to come out of surgery was not so easy).
The decision for Kasey to undergo surgery at the age of 19 months was also a no-brainer. She couldn’t hear due to glue ear and she needed grommets (tubes) in her ears. At that age Kasey couldn’t even say no, shake her head for no or nod for yes. She wasn’t even pointing at things. Later she would have more surgeries for grommets and another to take her painfully infected tonsils out. All these surgeries were for medical reasons and it would obviously improve Kasey’s health and development.
This situation however was entirely different. We were being asked to allow Kasey to undergo another invasive surgery for purely cosmetic reasons. We were being offered a procedure to ‘fix’ the external part of Kasey’s ears, a procedure called otoplasty. Kasey had no folds or cartilage in her ears and so they were smooth and poked out. It wasn’t hugely noticeable, in my humble opinion, except that Kasey has very fine blond hair and her ears did poke through a bit.
Of course as a parent you always think your child is beautiful and perfect as they are, but TS throws in another element you aren’t entirely prepared for as a parent. Your beautiful baby may be considered different by others and may experience life differently than your other children.
So how do you make the decision to place your child in pain and in an element of risk to undergo a cosmetic procedure? Will it be worth it? Will it improve their life? What would they do if they had the choice?
For me the dilemma was about choice. As parents we want our children to have choices and be able to make decisions for themselves. Is it fair to make a purely cosmetic decision for them when they are so young?
The argument is that they can have the operation at 4yrs of age, before they start school and they will never be hassled for those ‘pokey out’ ears and in essence never know the difference. I figured the same philosophy is taken when considering growth hormone for young TS patients ie; start the growth hormone before the difference in height is too noticeable and therefore avoid the issues of feeling different.
The operation requires the patient to wear a turban-like bandage constantly for 2 weeks. You could imagine wearing that as a school aged child or adult. You would have to hide out for 2 weeks! And of course as an adult you would have to pay for the operation while we were being offered it at no cost.
You will never really know if you made the right decision or not. But then I feel that is pretty much what parenting is about. You make the best decision you can with the information to hand. Sometimes later down the track you might realise you got it wrong, but more often than not no one will ever tell you if you did or not.
But anyway I digress. We decided to go ahead with Kasey’s operation. Her ears were like little mouse ears and while I thought they were very cute, I’m sure that when her first boyfriend tries to whisper sweet nothings into one of those ears she might not consider them ‘cute’. So Kasey underwent the operation and I sat tensely waiting (with occasional tears), still wondering if we had made the right decision or not. Would she be okay? Would her ears look okay? Would she scar badly?
The operation went well and we were presented with our beautiful little 4 yr old wearing a huge turban. The nurses had braided her hair at the top of her head so it poked out through a hole in the top of the ‘turban’. She looked like some sort of genie gone wrong. We bathed her in a bucket so that she couldn’t possibly slip in the bath and get the bandage wet because it had to stay on her head for 2 weeks. I wondered how she would sleep with that huge thing on her head but she managed okay. She didn’t seem in pain but then she did have about 4 inches of padding around her head. We stayed home for the first few days but it became clear that Kasey was getting cabin fever and needed to get out. She wasn’t phased by this bandage on her head at all, it was like nothing had happened to her. We ended up at the local shopping mall and the park. Kasey had a great time totally oblivious to the idea that she might look strange with a massive bandage wrapped around her head. At the end of those 2 weeks it was just like a movie where you finally get to take the bandage off and see what the plastic surgeons have accomplished. We all stood around her while the nurses tried to get the bandage off. The plasters holding the bandage on stuck hard around her forehead and I had to hold her hand and calm her while it was painfully pulled off. And then her ears were unwrapped. There were perfect little folds and her ears sat beautifully and flatly against her head. No scarring. Frankly her ears are works of art!
The surgeon said we would need to touch and rub her ears because otherwise they could become very sensitive. She didn’t like it and we probably didn’t do it often enough. Soon after this Kasey had glue ear again and needed grommets. We had to wait for around 5 months for this operation so we got hearing aids as a temporary solution. This was fantastic for desensitising Kasey’s ears as well as for her hearing and she was very good about wearing them and not losing them.
I am so glad we made the decision to go ahead with the operation, but of course that is because everything went well and in the end there has been no downside. I would never have believed that surgeons could produce such a perfect set of ears if I hadn’t seen it myself. It still amazes me to look at them.
Kasey has a lot of the characteristics of TS and as a parent I really want to protect her from feeling isolated or ‘different’ in a negative sense. On the other hand she has the most beautiful TS eyes. Some doctors have encouraged us to have her eyes surgically corrected so that she doesn’t have such a slack outer canthus. It’s a simple procedure, they have told me as they write out a referral to her plastic surgeon. I agreed to the first consultation only because I was worried that the slack outer canthus might be contributing to eye infections. On consult, the plastic surgeon felts it wasn’t a problem, I think he agrees with me that her eyes are far too beautiful and unique to want to change.
(Kasey’s surgeon was Dr de Chalain)