My daughter’s spine turned rogue… but she beat scoliosis in the end

scoliosis
When she stood and straightened, her spine did not straighten with her. I traced the line of it with my eye and it did not follow the customary route

Pregnant with my daughter (and first born),  I made a home and a garden and read Sylvia Plath-  herself pregnant and writing about her unborn child.

In her poem ‘You’re’, I latched onto: ‘Bent backed Atlas, our travelled prawn’ and her image of a curled spine, its bone traced pale in the darkness of the womb had come to life in the smudgy early scan photos I brought home.

In a few short months it looked as if her scapula had been pushed upwards and towards her clavicle and the top of her shoulders.

The lightness and brightness of my daughters backbone were illuminated on that little screen, then captured in a photo, the dark walnut of a heart and her own moon skull just like Plath’s baby which carried the weight of her hopes, just as my own unborn child carried mine.

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Nicola’s daughter before the diagnosis

Our spines are our midline, fulcrum and linchpin. They give us shape, hold us up and channel the electrical sparks that in turn give us volition and drive. A spine is metaphor for all kinds of pep talks: “Hold your head high!”, “Stand proud” “Show some back bone!” and sometimes, self reproach; “spineless”.

As my daughter grew, her spine turned rogue and one evening as she leaned over the sink to brush her teeth, shortly after returning from a holiday somewhere hot where she ran on the sand, straight backed and carefree, I saw that it had changed.

In a few short months it looked as if her scapula had been pushed upwards and towards her clavicle and the top of her shoulders. When she stood and straightened, it did not straighten with her. I traced the line of her spine with my eye and it did not follow the customary route- the one my eyes wanted to take.

A call to the doctor started a process that introduced us to the team that would change everything for her. As two years rolled past, her spine continued to curve and twist, copying the name of what afflicted her-kypho-scoliosis, horridly onomatopoeic with roller coaster consonants and vowels.

Her ribs resembled a wing bulging out of her side, her shoulder blade reared upwards and she ached with the effort of supporting a skeleton which was not supporting her and the physical discomfort of lungs restricted in a cage of twisted rib.

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On a roller coaster with her brother before the operation

“The operation will consist of anterior release of the thoracic curve through double mini thoracotomy on the convex side of the right side of the deformity. Second stage will be posterior correction with multi segmental fixation system and two rods. The surgery takes practically all day” said the letter from my daughters consultant.

As two years rolled past, her spine continued to curve and twist

In the UK, Scoliosis and its variant forms affect 3 or 4 children out of every 1,000 and can develop at any age but is more common in adolescence. In very young children, Scoliosis may correct itself but for older people, this is unlikely without treatment and the curvature may get progressively worse. My daughter soon achieved a magnificent double curve of 85% as we watched in trepidation, our fears and her spine appeared to spiral off in tandem.

“The waiting is the worst” became her mantra. The outpatient visits, the measuring with calipers and acronyms that moved her in and out of dark tunnels (MRI), around her (CT) and asked her to stand semi naked in rooms empty except for large machines and strangers peering through a window in a lead protected room (X Ray).

Adolescence is a time when a child redefines boundaries, appreciates privacy and develops their sense of impending adult self. My daughter, however, was being stripped naked and asked to offer herself up for examination and photography.

Then, on the day of the operation, “the waiting is the worst” turned from thought to chant as she lay on a trolley rolling down to theatre, a quietly assuring teddy bear of an anesthetist by her side.

We knew things could go wrong- two weeks before a young boy having a similar operation had died of post operative complications and our surgeon had been deeply distressed by this loss and postponed my daughters surgery as a result.

We shook hands and I remember his hand in mine, steady, dry palmed and cool. I felt reassured.

She came round that night. Postoperative morphine made her strangely adult and stoned; sage pronouncements came from this tiny, wounded creature in her bed.

Early on we pressed the patient controlled anaesthesia for her when she was asleep to ensure pain did not wake her and her sleep became our respite. It allowed us to drop our adult guard and slump, show our worry on our faces to each other and the staff.

Gradually though, this turned into a belief that it was going to be okay. Strange fevers and awful things growing in her bones would not take her away.

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“If anyone asks about her scars she jokes that she was mauled by a tiger.”

MRSA was the monster under the bed we feared the most and as her incision healed strong and clean, we imagined the bone grafts in her spine becoming impervious and inviolate, merging with existing bone although in fact, the grafts take several years to become fully patent.

We live in image heavy times and the messages we are given about what is beautiful and what is perfect are twisted and skewed.

My daughters spine and ribs became master of her self image for a while. They ruled her growth as a young woman and caged her with pain and embarrassment.

She worried about it skewing her in the eyes of others although she has met men who have loved her for who she is and admire her courage and dignity in coping.

Now, 11 years on, she has her scars, the beautiful and striking faded line that zips south from nape of neck to coccyx and the two slashes across the side of her torso.

If anyone asks about her scars she jokes that she was mauled by a tiger. A few people find that more believable than the truth.

It took her a full year to be signed off from care and the first two months after the surgery she had to lie flat, in bed. But now, three inches taller, the latter a result of the surgery, she is fully recovered- she is a patissiere and spends twelve hours a day on her feet.

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