/ The RE's Muse: That which has not been named

The RE's Muse

After 4 years of infertility, 2 surgeries, 1 miscarriage, and 19 months of high risk pregnancies, hubby and I now have two little women in our lives--one a toddler, the other not far behind. Buckle your seatbelts, it's gonna be a wild ride.

Friday, March 03, 2006

That which has not been named

(Disclaimer: This post, she is a long one. If you're up to it, pull up a chair, bring a drink--poison of your choice, and join me.)

Most mornings, I wake up and get the baby ready for 'school,' and think to myself that this life I live is a pretty good one. The weather here lately has been exceptionally lovely (read not too damn humid or hot) which I think adds to my rose-colored glasses take on life at this particular junction.

But then, then there is the bad, that which I do not speak of in this space, that which I keep bottled up inside, quietly eating away at me. But I think the time has come to share it because it worries me and perhaps it'll do me some good to get it all on the outside, instead of all pent up in my head.

You see, J has this minor physical anomaly, CMT, that she was born with. Now, in the grand scheme of things, it's not horribly deforming or debilitating, but as a mother, well, you scrutinize your child for every little thing and anything that deviates from what society perceives as 'normal' is cause for concern.

So several days after J was born, A and I both noticed a small palpable mass on the side of her neck. We brought it up to the one pediatrician we saw most in those early weeks at the practice. Ah, it's nothing, he assured us. A branchial cleft cyst, a vestige from the embryonic stage, something we will remove after she's a year or so old in a simple outpatient procedure. We were reassured (to a degree) and moved on.

Fast forward a few months, okay, more like 3, and we had noticed that J kept her head turned to her left and tilted to the right A LOT. And that one of her eyes was the slightest bit asymmetrical to the other, and that a portion of the back of her head was slightly flat (plagiocephalic). But when I would bring these things up at the pediatrician's office, I was reassured by the original doc that it was probably nothing.

But something still didn't seem right. The head turn continued as did the eye asymmetry. So I started pushing. I asked if we could have the ultrasound done on her neck in preparation for the procedure in the months to come. Oddly though, in that time, A and I had noticed that the mass had all but disappeared from her neck. And then it didn't show up on the ultrasound...or rather the u/s was inconclusive.

Fast forward about another 2 months, and we're seeing a different partner at the pediatrician's practice, one who takes one look at J, asks if we noticed that she favored her head to one side and also kept it tilted. We responded that we had. Hmmm, that doc said, she's got [congenital muscular] torticollis.** Bingo presto, a diagnosis and then a plan of action.

J started weekly physical therapy immediately. We also went to see a pediatric opthalmologist to make sure J's eyes were okay and not the reason for the torticollis (they weren't). And we then saw a pediatric plastic surgeon to discuss putting J in a D0cBand (a helmet-like device) to correct the slight flatness and asymmetry but he determined that her deviation from the norm was so slight that the band wasn't necessary. He did prescribe an innocuous collar for her to wear while at home in hopes it would alleviate the head tilt.

Now, almost 4 months later, the collar does nothing to alleviate the tilt so we've stopped making her wear it. We started craniosacral therapy in early January (which, in all honesty, is a little new-agey for me) and we've continued the PT, but while the head turn has been corrected, the tilt has not.

This week, the physical therapist told me that J's case is one of the more severe ones she's seen and that she doesn't think the PT will alleviate the tilt at all. She mentioned the possibility of surgery to cut out the fibrotic muscle tissue in J's sternocleidomastoid muscle, followed by a certain cut to the muscle to elongate it. She also mentioned a fairly new procedure (one the pediatric plastic surgeon had also mentioned in passing) of injecting b0t0x into the muscle to paralyze it, thereby eliminating the signal to J's brain to tense and tighten the muscle, allowing it to stretch and--bam--end of the tilt. Or so we'd hope, yet the b0t0x is not a permanent fix as it only lasts for a few months until the next dose.

But who knows....

We follow up with the plastic surgeon later this month...should be interesting. And damn if I'm not scared of the options. Yes, I know that there are worse things J could have. I know that in the grand scheme of things, this is nothing. But damnit, to know that something's wrong with her, something that it's going to hurt her to have fixed, it kills me a little bit inside.

So I'm not the Pollyanna I make myself out to be. We have this troubling "secret" in the Dee house. One that clouds my days. One that I've shared here in an attempt to unburden my fear and worry. One that is small in comparison to the problems so many others--both children and adults--face, but that is huge to me and to one very small girl in my family.

And it doesn't help me knowing that the torticollis came from either one of two factors--1) malpositioning in utero; or 2) a traumatic delivery (i.e., forceps, breech, etc., and well, you my lovelies may recall that it was the giant salad tongs from hell that brought her physically into this world). J was also face up at birth--something that I keep wondering why no one realized before I was induced. Sunnyside up babies are usually cause for c-section. I had been having weekly stress tests (and biophysical profiles & ultrasounds with all 8 of the 10 failed stress tests). Hell, I had one done a mere two days before I was induced. Would J not have gotten torticollis had they given me a c-section? We'll never know, but now A and I are left to deal with the outcome. And I just want this chapter of her story to have a happy ending. That's all I want...I hope it's not too much to ask for.

**It is thought that congenital muscular torticollis, or CMT, comes to be by way of an injury (through malpositioning or traumatic birth) to the sternocleidomastoid muscle in an infant's neck. The trauma causes a hematoma (the palpable mass we saw early on on J's neck). While the muscle reabsorbs the blood and damaged tissue in time, it leaves behind scar tissue. It is this scar tissue that tightens the muscle (because scar tissue has no elasticity) and causes the muscle to shorten, hence the head turn and tilt.


At 10:16 AM, Blogger April said...

Oh my dear Dee, the three of you will be in my thoughts, as always.

At 11:26 AM, Anonymous lala said...

I sat through that, it didn't seem terribly long.*g*
I'm glad you got it out though, you're being hard on yourself I think. I hope it comes to a non-surgical resolution and you can put it all behind you. Take it easy.

At 12:46 AM, Blogger WriterGrrl said...

Oy, I'm sorry you're going through this. I know your pain. And, hello, guilt? Yes, we are QUITE familiar with the whole guilt thing. It's late here now, and I'm not too coherent, but please know that I am thinking of you and I may have to return in the morning to post new thoughts to you. For now, keep asking questions and arm yourself with information. I'm sure you can find parents who went through this and who can give you their take. Also, if you aren't already, get a referral to someone who is specifically at your local Children's hospital. The difference between our pediatrician and the docs affiliated with Children's -- it's like these guys are SuperDocs or something. Really. And they block off whole hours for appointments! So you can actually discuss options. What a concept. And by the way, nothing is small when it comes to our kids. Just because other people suffer other things doesn't make your suffering --particularly your suffering on behalf of your kid -- any less relevant.

At 9:00 PM, Blogger ThreeBees said...

I so glad you finally shared what you all have been going through . . . I am thinking of you and J and hoping that they'll be able to help J.

Much love to you.

At 10:06 AM, Anonymous Frances said...

You had mentioned the PT in a post a while back and I was wondering if all was okay. I'm so sorry you're all dealing with this...it must be heartbreaking, as a parent. Good thoughts to you all - and I hope J's issue resolves quickly and painlessly.

At 4:13 PM, Anonymous Menita said...

Oh Dee I just saw this. I can only imagine your heartbreak and worry at seeing your little one suffer. I second the thought about the Children's Hospital docs -they really are another breed.
And you should NEVER feel you have to justify your suffering to ANYONE - this is your child, your beautiful, beloved little girl. OF COURSE your whole being is going to ache until she is well. Please keep us posted on how things go. I will be thinking of you, my friend.

At 10:06 PM, Blogger Toffee said...

Oh Dee, my thoughts are with you for you to keep strong. I am just now catching up on my blog reading due to a computer problem.

I actually work with some physicial therapists who work solely with children and this is a common thing for them to work on. At our case conferences the treatment is usually exercises done at PT and at home and surgery is only considered later in life.

If you are not already, you might consider going to a children's rehab place where they work sole with kids (or like the Children's hospital as others suggested) since she has not improved very much so far.

I know it is easy to say not to be guilty, but that seems to come with the work of being a parent. Wishing you the best...


Post a Comment

<< Home

free hit counter