I’m reading a book of essays called Surgically Shaping Children: Technology, Ethics, and the Pursuit of Normality. I’m reading it because my son, Monkey, was born with an anatomical difference called a lymphatic malformation (LM). These are most commonly found on the face and neck but can also affect limbs and even internal organs. His is on his chest wall. It is large (he had to be delivered by c-section) and visibly changes the shape of his body.
Through Monkey’s first year, I felt very conflicted about dressing him. I felt I had almost a moral obligation to dress him in concealing clothes, yet friends and relatives kept giving us onesies and other tight-fitting shirts that made his difference more obvious. I’m not sure whether I felt the obligation was to him (despite his lack of awareness) or to other people.
When he was around a year old, his LM, which until that had always grown proportionally to him, grew more rapidly and became firm and painful. It was very obvious and no longer made much of a difference what shirt I put him in. Then there was the day at library story-time when he pulled up his shirt to show another toddler his belly button, giving a full view of his torso in the process. I saw one mom staring and I’m sure she was thinking “What the bleep is that?” I kind of chuckled to myself. I thought, if Monkey has no self-consciousness about it, what right do I have to be “self”-conscious about it? His body is not inappropriate. Nor do I have an obligation to protect other adults from the discomfort of seeing his difference. So I relaxed and started putting him in whatever outfit seemed cute and comfortable.
Truth be told, I’m so used to his body that I find myself searching other toddlers for that familiar shape and feeling like they are missing something.
At the point that his LM began to enlarge more rapidly, we had not done any treatments. He’d seen a surgeon at birth who wanted to remove it when he was a few months old, but we were uncomfortable with the surgeon and sought a second opinion at the university hospital. The surgeon there referred us to an interdisciplinary vascular malformations clinic, which decided that he should be treated with sclerotherapy by an interventional radiologist. The radiologist wanted to wait and see what happened. So that is what we did. After his first birthday, when the LM got so large that it affected his mobility and seemed to be causing him pain that disrupted his sleep, we decided to begin sclerotherapy treatments.
Unlike surgery, the sclerotherapy does not actually remove the abnormal tissue. Instead, it scars it down so that the cysts cannot refill with fluid. Neither treatment is a cure. Recurrence after surgery is common, especially since it’s often impossible to remove all of the tissue without damaging nerves and veins. I found myself having to explain this over and over to relatives, acquaintances, therapists, and doctors, as everyone was constantly asking me “When are you going to get that taken care of? When are you going to fix it?” They assumed it was something that could simply be removed, like a mole, and be done with. Furthermore, after he responded poorly to his first treatment and his second treatment caused swelling and painful blood clots, our decisions to use sclerotherapy instead of surgery were questioned by these same people. “Why does he have to have so many treatments? Are you sure your doctor knows what she’s doing? Wouldn’t it be easier to do surgery?” And then I had to explain that no, surgery carries greater risks, including higher risk of infection, bleeding, nerve damage, and scarring. Sometimes lymph fluid will chronically leak through the scar for years after surgery.
I was frustrated at the implication that neither I nor my son’s doctor were making the right decisions for him. But even more than that, I felt, and continue to feel, a social pressure to make his anatomical difference go away. People who have no personal investment in my son’s health ask me “Are they going to remove that? When?” as if it were important to them. My response to this, influenced by reading disabled activists and theorists, is to examine my own motivations for treating his condition at all.
Cassandra Aspinall, a social worker with a cleft lip who counsels parents of children with craniofacial differences, writes, “[Families] deserve a chance to try to distinguish between operations that satisfy the child’s desire to bring her appearance more in line with how she sees herself and operations that bring her appearance more in line with how others think she ought to see herself. […] it’s important to start asking some simple questioins like, What is the problem that is being treated? Whose problem is it? and, Who will benefit?” (“Do I make you uncomfortable?”, Surgically Shaping Children, pp. 15-16).
At this point, my son’s three sclerotherapy treatments have been motivated by matters of mobility and pain. After the swelling from the second treatment receded, his LM finally started to shrink and soften. He walked less lopsided, started sleeping better and complaining less of pain. Ultrasound confirmed some of the cysts are breaking down. We are still waiting for swelling and clots from the third treatment to resolve, but hopeful that the positive trend will continue. And if it does, then what will be left will be mainly a cosmetic issue.
This is where I will have to draw the line with people who continue to ask, “When are they going to remove it? When will it be fixed?” Because at that point, the problem they want me to fix will be their own. And I’m not going to subject my two-year-old to another bout of general anesthesia, Jackson-Pratt drains, bandages, restrictions, and pain, to fix some adult’s problem with his appearance. I would much rather put my energy into changing the attitudes of those around him.