Monday, May 3, 2010

A Tale of Two Surgeries

We've been moving toward two different outpatient surgeries for Joy, for a while now.

One of them has to do with the scar from her nevus-removal. Joy had three surgeries in her second year of life to remove the nevus-sebaceous "blotch" from her scalp, so that it would not run the risk of cancerous changes later in life. Cosmetically, it was good to have it gone too! It healed up quite neatly, but her scalp stretched as her head grew, and now the scar is about a quarter-inch wide. Nobody notices it when her hair is long, but last year when she had a buzz cut so she wouldn't pull out all her hair by the roots, you could see it pretty clearly:

Nevus Removal Scar, 3 years out

Way back when she had the surgeries, the plastic surgeon advised us that we'd probably want to do a scar-revision surgery once Joy's head had grown, maybe before kindergarten -- and that our insurance generally covered scar-reduction because it was a follow-up to the original covered surgeries. We were going to get it done last summer, but then we had other health issues to contend with and decided to wait till this year.

Meantime, we discovered that Joy has a small umbilical hernia. With many kids, little childhood umbilical hernias close up on their own by the age of 5 or so. And when it's as small as Joy's is, even past age 5 they'd normally leave it alone. But we've got a bit of a family history -- JoyDad had such a hernia that "popped" on him as an adult (as in, lots of pain and two surgeries, one on an emergency basis). Plus, Joy has unusual pain responses and isn't reliably able to show us where it hurts, just in case things did go wrong with hers.

Fortunately, the surgeons to do both procedures are in the same network. Joy's pediatrician helped us come up with the clever idea to do both the procedures in one event, so we'd only need one go-around with the anesthesia. The surgeons agreed, their schedulers got us all set up, we were on the calendar for June 2...

And then our insurance denied the scar revision. JoyDad went to a hearing to make our case, and they denied it a second time. Further pursuit of the case might involve legal consultation, and would certainly not be settled in time for the scheduled surgery date.

Our current plan is to pursue the hernia repair, but not the scar revision.

Thought experiment: what if these surgeries were for Rose instead of Joy? Would we react differently?

I can tell you right now, for Rose the scalp-scar would be a BIG DEAL. She's sensitive about her appearance, sensitive about teasing. If she reached adolescence with such a scar, it would be an emotional issue and a decided challenge to overcome (though I've no doubt she'd deal with it if need be). Pushing the case would be worth some sacrifices. I think I'd feel the need to at least consider the out-of-pocket option.

If Rose had the hernia, however, we could let it ride. She could tell us immediately if something did get to the point of hurting.

Meanwhile, Joy has shown no self-consciousness whatever about her appearance so far (and why should she, adorable as she is, in our unbiased opinion?!) She interacts with mirrors enough to be drawn to them and make funny faces -- does that mean she knows its her, though? As far as noticing teasing, we've been fortunate that she hasn't encountered it yet. Though of course she's off to school in just a few months.

But it doesn't take a scar to mark Joy as different.

Given where we are right now, and what we know about autism and about the world: the people who are sufficiently open of spirit to accept Joy for the amazing person she is, are going to be entirely unfazed by the presence of that scar.

The people who are going to be cruel to her will find plenty of differences before they even notice her scar.

Plus, the scar may simply never matter to her, even if/when she becomes aware of it. And if it does turn out to matter? Maybe that's something she ought to get to decide when she is at a point to be making such decisions.

With the hernia, though, that could potentially turn into a medical emergency. Even, possibly, way down the road when JoyDad and I might not be around, and nobody remembers that JoyDad had a hernia history. And we can't guarantee that Joy will be able to communicate about it.

So we're on the calendar for a hernia fix, still in early June. Think good thoughts for us, that the surgery goes smoothly and doesn't put any major setbacks into Joy's wonderful developmental progress these past weeks, and that we've made the wise call.


DQ said...

JoyMama, reading this particular post makes me shake my head. Firstly, I am sorry you live in a country with a health system that seems so unjust. I live in Australia, where even if we had to wait 12-18 months or more, we could still get these surgeries for anyone in our family with a low out of pocket expense via the public health system of Medicare. I am truly sorry you were refused the scar reduction, because it seems unfair to have to make this kind of decision and because it makes no sense to me that an insurance company can refuse this kind of service. From my own point of view, I had a small umbilical hernia that went undetected until my younger son was 3 years old. I had pain during my first pregnancy but was told this was normal by the midwife, the pain was worse the second time round but again was told this happens. I ended up needing a repair as it had gotten just big enough (while still being very small) to cause significant pain on a daily basis. (I happened to be living in the UK at the time, and through their health system, due to back log on the public list for this surgery, was put through privately at no expense to us AT ALL. I didn't even pay for the prescription pain medication they issued after the surgery.) The repair is now nearly three years old and while I have some discomfort from time to time, it is much, much, much better. I am certain that having the repair when young will make a big difference down the track for Joy, and as you say, it is hard to know how much pain it may be causing her now. I wish you all the best for the surgery, I will keep you in my thoughts especially in June.

Anonymous said...

JoyFamily always in my prayers.


Anonymous said...

I wish you (for the worry) and Joy well for the surgeries come early June, and will send up prayers for the little one.

jess said...

It sounds like you've thought it through, my dear. I don't doubt your wisdom for a second.

You will all be in my prayers (as always).


AuntieS said...

I will keep all positive thoughts for Joy that the surgery will go easily and will cause no disruption to her wonderful progress. I believe she will come through it all with flying colors! I do also believe that you and JoyDad are making the best possible decision for Joy and your family at this time with the circumstances that you face. I know you always put much thought and research into your decisions, and you both have wonderful parenting instincts. I am frustrated when insurance companies determine medical decisions rather than the doctor. We had a situation with your oldest nephew where he needed a surgery for relief of pain as well as cosmetic purposes, and insurance wouldn't cover it either as it was not deemed to be necessary. His doctor, as well as the surgeon, felt it was necessary, not just for appearances sake, but also for his general health and future health, but the insurance company wouldn't budge. Very frustrating.
Anyway, we will be sending those positive vibes to our dear little Joy!!!

Floortime Lite Mama said...

i think you totally made the right choice
Sending many good luck vibes to you

Anonymous said...

Tough choice to have to make. Will keep all in my thoughts and prayers. You'll have to excuse me if I bounce her up and down a few extra times when we are up at the lake!

Uncle Marathon

JoyMama said...

Thank you all for the positive thoughts & vibes & prayers!

DQ - thanks for your perspective on the healthcare system. I find it beyond frustrating that the US cannot seem to do what other countries manage as a matter of course: treat healthcare as a right instead of a privilege. On the other hand, our personal experience with our insurance company has been very positive so far. I'm guessing that if we'd done the scar revision a year ago, they'd have paid... our plastic surgeon's office certainly seemed to expect it... but the economy is tight and the state has passed new mandates since then... including insurance coverage for autism, from which Joy is benefiting. Glad that you were able to get your hernia fixed. Your story is good evidence to further support that we're doing the right thing!