My first daughter was born with hip dysplasia — put simply, her hips didn’t quite fit properly into their sockets. It’s not an uncommon condition, particularly in firstborn girls, and in some countries all babies are required to be tested for it at birth. The United States isn’t one of those countries, but Casey’s pediatrician picked up on it in the newborn exam and sent us off to see a specialist when C was just a day or two old.
If you catch dysplasia early and treat it properly, the treatment is straightforward and the prognosis is excellent. Casey was put in something called a Pavlik harness for the first couple of months of her life — the harness nudges the legs into a position that presses the hips into their sockets so that the joints grow properly. (That’s her in it on the right.) If it does what it’s supposed to, and it usually does, the hips develop normally and the child can typically expect no complications later on.
But if you don’t catch dysplasia early, or don’t treat it properly, things can turn bad in a hurry. When the hips develop without a snug fit into their sockets, the joint surfaces get bumpy and rough. Treatment progresses from the harness to a waist-to-ankles cast, and from there to surgery. If the condition is missed or mistreated in infancy, hip replacement in middle age is not uncommon.
My ex-wife and I were lucky. We had a good pediatrician, an excellent specialist, and solid insurance. Casey got the harness, we put her in it, and it did its job. Every few years we go back to make sure everything’s still okay, and every few years it is.
A lot of families, and a lot of kids, aren’t so lucky. If you go looking, you’ll find that the internet is awash with stories of kids whose doctors missed the diagnosis, or screwed up the treatment. (Double-diapering used to be a standard approach, for instance. Some docs still recommend it, even though it’s been shown to be completely ineffective.) Huge numbers of kids are facing pain, disability, and invasive surgery that in many cases could have been avoided by a simple, straightforward medical intervention.
I’ve been thinking about that today because of Leelah Alcorn. Leelah was a transgender teenager, and she killed herself this week. In her suicide note, posted to Tumblr, she said that her parents had rejected her gender identity, disrupted her social networks, and refused to support her in transition. She cited all this as a major reason — though not the only reason — for her suicide.
Leelah’s note went viral quickly, and once her parents were identified they became the target of a torrent of anger online.
That anger is by no means unjustified — it certainly appears that if her parents had been more supportive of Leelah she would likely be alive today. When Leelah’s mother Carla gave an interview to CNN on Wednesday, her comments validated much of the account in Leelah’s suicide note. Asked about her child’s transgender identity she said that she and her husband “don’t support that, religiously.” She confirmed that they had rejected Leelah’s request to start transitioning medically and that they had cut off her access to social media. Most jarringly, she referred to Leelah as her son throughout the interview.
But there was another side to her comments to CNN as well. She said that she and her husband had loved Leelah “unconditionally…no matter what,” and told her so. She called Leelah “a good kid,” an “amazing musician and artist,” an “amazing boy.” One interview can’t tell us much about a family, of course, but to me these words feel honest — the anguish of a loving mother who has lost her adored child forever.
So what are we to do with this? What are we to make of it?
I don’t believe Carla Alcorn’s words exonerate her. When Leelah needed support and understanding she and her husband were unwilling or unable to provide it, and the consequences were devastating. At the same time, however, I can’t reconcile Carla Alcorn’s words with the idea that she hated her child, or turned her back on her, or sought to harm her.
Which brings us back to my daughter, and her Pavlik harness.
Some parents who fail to pursue a proper diagnosis of their children’s dysplasia are surely neglectful. Some parents who double-diaper them instead of obtaining real treatment are lazy or uncaring. But far more, I suspect, are simply unaware. They want their kids to be healthy and happy, and if they knew what to do to make that happen they would do it. But they don’t know, and they don’t have the tools to find out.
My family was virtuous when we got the dysplasia diagnosis. We followed up with the specialist. We put Casey in the harness and we kept her in it. We bathed her around it, we left it on for photos, we splayed her legs the way we were told. We were freaked out, and our fear made us conscientious.
But we were also lucky — lucky to have good doctors and good insurance and nobody whispering bad advice in our ears. Lucky to have the resources to do what we were supposed to do, and lucky to reach the desired outcome. If we hadn’t been so lucky, would it have made us worse parents? Would it have meant we loved our daughter less? I don’t know.
I don’t know what resources the Alcorn family had. I don’t know what advice they got about Leelah. But I have a hunch, and my hunch is this: That their church and their friends and the therapists they consulted let them down. That they didn’t get the support they needed to get to a point where they could give their child the support she needed. Yes, they failed their daughter, and they will live with the consequences of that failure for the rest of their lives. But what of their pastor? What of the therapists? What of the friends and acquaintances? Are they in agony right now? Are they grieving? Is their love for Leelah and their failure to save her tearing them apart?
Leelah Alcorn is dead. Carla Alcorn is the mother of a dead child. Both losses are incalculable tragedies, and both can be laid at the feet of our society’s fear, hatred, and incomprehension of trans identity. We need to do better. We need to do more. We need to save the next Leelah Alcorn from her fate.
And we need to save the next Carla Alcorn from hers.