A Real Pain in the Neck

It started with a small, hard lump in Marianne’s neck – my mother noticed it one day, when our baby was just two months old, and brought it to our attention. We felt it beneath the skin – a noticeable bulge along the ligament running up to her left ear – and a gnawing suspicion crept into our minds.

Over the next few weeks our baby continued to grow happily and healthily, but the hard lump remained there, though diminished in size.

At her monthly check-up the doctor advised that we simply wait and see (“Could be something she outgrows”), and if it was still a concern, to take her to see a pediatrician at the Children’s Hospital (The Capital Institute of Pediatrics, 首都儿科研究所) by Ritan Park. 

A few months have since passed, and though all else seems fine, Marianne still has a noticeable, albeit subtle, head tilt. Early last week, we finally took her to see a specialist at the Children’s Hospital and unfortunately, the diagnosis was as we suspected: our daughter, it seems, has an case of Congenital Torticollis -- a not entirely uncommon condition (also known as “wryneck”) in which a baby’s head grows in a tilted position due to the “shortening of the neck muscle that runs up towards the back.” Though it does not pose any immediate danger for our daughter, if left untreated, this condition can become more serious over time, causing problems with her eyesight and leading to the asymmetric development of face, which can cause a host of other physiological and neurological problems that I don’t even want to think about.

Looking back, there have indeed been telltale signs – Marianne’s consistent aversion to being held in a cradle position (and baby sling, for that matter), the slight misalignment in her facial structure, her tendency to favor looking to her left, even her very early ability to hold her head upright, all seem to indicate this condition.

 According to the Ritan doctor, the worst-case scenario would require surgery around the time she turns one – a most unsavory proposition. The good news is that there are many cases in which regular massage and even simply “outgrowing” this condition have resulted in 100 percent Torticollis-free babies, but it is too early to tell.

This past Friday, we took her to the newly done up Children’s Hospital (儿童医院) out west by Yuetan  to get a consultation with a specialist. After showing up at 6am to register, we were assigned the 44th spot in the queue, which meant that we got our five minutes with the doctor at around 11:30am.

As we anticipated, the doctor agreed with the Ritan diagnosis and suggested we give our baby a daily massage on the affected neck area in addition to having her sleep on a special pillow that angles her hear to the left and tilts it downwards, thus stretching out her neck ligament and hopefully eventually correcting the tilt. He also urged us to get her eyesight checked up at five months (which is in a couple of weeks) to make sure the head tilt wasn’t screwing up her vision as well. If all else fails, then an operation will be the only option. 

After the morning consultation, we stayed on well into the afternoon waiting around for a session with the hospital massage ward. The massage, conducted by an infant specialist, lasted about 10 minutes and consisted of a combination of vigorous rubbing on our baby’s tender little neck followed by a series of roughly plied head turns, which was a bit like watching someone’s neck get snapped in the movies – the only difference being that it was our baby and not some hapless movie extra.

Marianne, rattle from her afternoon nap, wailed the entire time – both from discomfort and frustration over the fact that Mama and Papa were just standing by and tensely watching as her head was being cranked back and forth by a stranger. It was an excruciating experience for both baby and parents and one that we would never want to repeat again.

Unfortunately, repeat it we must – on a daily basis, in fact. Now, every night after bath time, we are obliged to spend ten minutes rubbing our baby’s neck interspersed with five-second “head twists” which invariably sets little Marianne off wailing like a siren. Difficult as this may be to do and watch, the possible alternative of requiring surgery at such a young age has been motivation enough to keep it up. Hopefully time will diminish both the head tilt and the wince-inducing tears.

Visit the following websites for more information on Congenital Torticollis:
iVillage
University of Virginia Health System: Congenital Muscular Torticollis
Symmetric Designs - Treatment 
Children’s Healthcare of Atlanta
Hospital for Special Surgery