“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.”
The explanation on this letter from my daughters consultant neuro-orthopaedic surgeon made sense to me because I have invested some of my working life in training to decode the mysterious and protective language of medicine. It deals in the measurable, the objective and the recordable, flying in the face of the vagaries of the human body and its messy emotions. Some weeks after receiving that letter, we had a last meeting with her surgeon and his specialist registrar at nine pm on the day before the surgery, down in the reception area of the X Ray department, my daughter safely sedated and asleep upstairs. This meeting dealt with the less objective- a promise to do their best and an admission that sometimes things could go wrong- two weeks before a young boy having a similar operation had died of post operative complications. Our surgeon and his specially trained team- handpicked by him to manage the demands of a surgical procedure that used to be two-stage and now, thanks to his hard work could be done all in one, were all deeply distressed by this loss. We shook hands and I remember focusing on his hand in mine, steady, dry-palmed and cool. I felt reassured. I did not have doubts.
Nearly seventeen years earlier and pregnant with my daughter (and first-born) I made a home and a garden and read Sylvia Plath- happy Plath, herself pregnant and writing about her upside down tumbling unborn child. In ‘You’re’, I homed in on her words: ‘Bent backed Atlas, our travelled prawn’ and this image of a curled spine, the bone traced pale in the darkness of the womb had come to life in the smudgy early scan photos I brought home. 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.
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 motor, volition and drive, movement, or the ability to choose to be still. A spine guides the body as it grows and develops and 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 on her and one evening as she leaned over the sink to brush her teeth, shortly after returning from a holiday somewhere hot where she wore few clothes and ran in the sand, straight-backed and carefree, I saw that had changed. Somehow 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 spine with my eye and it did not follow the customary route- the one my eyes wanted to take.
A deep breath and a call to the doctor the next morning started the process that led to our time at a regional hospital, home to the team that would change everything for her. And as two years rolled past, we watched her spine continue to curl, curve and twist, copying the name of what afflicted her- scoliosis with its S and ss, onomatopoeic and disliked with roller coaster twists of consonants and vowels. Her ribs twisted into a wing bulging out of her side, her shoulder blade reared upwards and she ached with both the effort of supporting a skeleton which was not supporting her and the physical discomfort of lungs restricted in their cage of twisted rib.
“The waiting is the worst” became her (and our) mantra. The repeat out-patient visits, the measuring with callipers and a series of acronyms that moved her in and out of dark tunnels (MRI) and moved around her (CT) and asked her to stand semi-naked and vulnerable 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 their boundaries, asserts their privacy and develops their sense of impending adult self, but my daughter was being stripped naked and asked to offer up her internal and external self for examination and photography. “The waiting is the worst” moved from something thought to something chanted as she lay on the trolley, rolling down to the anaesthesia department, waiting to be ‘flown’ by a quietly assuring teddy bear of an anaesthetist who promised he would not leave her and did not- he stayed with her not only for the thirteen-hour surgery as was his remit, but also one to one’d her in the recovery room and ITU. His own memory of losing his last scoliosis-afflicted patient was fresh in his mind. My daughter was the first surgical case after that tragedy as the team had taken a few weeks to reassess and try to learn from what happened whilst we sat at home and wobbled and worried.
We were and remain grateful to her surgeon who insisted he would not undertake the surgery until my daughter had done her research and could show she was fully cognizant of what it would involve, both surgery and the arduous and often tedious rehabilitation. A familiar pattern assumed itself- a visit to the surgeon for monitoring, a chat on the way home followed by research online supervised by us, then tears, anger and finally pragmatism. “I have no choice so I need to get on with it. The waiting is the worst.”. In the United Kingdom, 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 at the start of adolescence. In very young children, Scoliosis may correct itself as they grow but in older children and adults, it is unlikely that scoliosis will improve without treatment and in some cases the curvature may get progressively worse. My daughter was one of them and she soon achieved a magnificent curve of 85%: a spine akin to the curviest roller coaster at Alton Towers- a double curve in fact (Kypho Scoliosis) as we watched in trepidation. Our fears and her spine appeared to spiral off in tandem.
“The patient will be nursed in bed for seven days. After six to eight weeks the patient is usually well enough to travel by car. The patient will not be able to sit for six to eight weeks and will have to remain flat on their back or upright for short walks to the bathroom. The patient will not be fit to travel home by car and will be transported in an ambulance.”
Seven days of chest drains and urinary catheters. Of morphine pumps and a ward filled with women twenty to thirty years older because she fell into the gap between child and adult services. Obtaining the menu from the children’s ward was reassuring- fish fingers and chips and teddy bear-shaped food allowed her to regress back to a time that seemed commensurate with her level of dependence. Yet the morphine also made her strangely adult and stoned; sage pronouncements came from this tiny, wounded creature in her bed. We pressed the PCA (Patient controlled anaesthesia) for her when she was asleep in those early days to ensure pain did not wake her and her sleep was our respite too. 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 from things growing in her bones would not come to take her away. 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.
A trip to X ray to check placement of the rods resulted in a meeting with a radiographer who introduced himself to her by saying “I saw your beating heart”- her thoracotomy and coloplasty had left her laying opened up and exposed on the table while the radiographer was brought in as part of the team responsible for her spinal cord monitoring and preparation for placement of those rods. She was unfazed and deeply proud of the fact that two of her ribs now lay in the bone bank to help others. She was intrigued by what had gone on during her surgery. “What did you both do Mum while I was under?” Endless Scrabble games kept us sane plus a flat in the hospital’s staff accommodation. Buckets of ice-cream, walks, sleeping, time as a family, cooking in the flat’s kitchen with other residents. We turned inwards and forgot about everything else. It was shocking to us to see the reactions of other relatives to her. Seeing the distress on their faces at my daughters temporarily bloated swollen face (oedema from being face down for hours on end) pulled us out of our self protective bubble. We found it easier to cope by not being told how well we were coping.
How can I explain how I felt upon my return to the ward after a walk, to see a straight-backed girl in pale yellow t-shirt sitting, her back to me, on the edge of her hospital bed, being supported by two physiotherapists? I had grown so accustomed to the brutal curve of her spine that it had become an identifying feature. Lazily, it had become easy to use that. It was gone and what replaced it was a success beyond the hopes of her surgeon and his team. The remaining curve was imperceptible to the naked eye and the twist to her rib cage was now hidden by clothing. She stood up carefully and briefly, crying from pain and my other marker of time passing had changed: she was four inches taller- although as the weeks went by this settled to three. We had plaited her hair before the operation and she had been kept so still that the plait remained, tidy and neat, following the livid scar that traced the now straight line of her spine from nape of neck to her butt.
“After six months following follow up in clinic, the patient can gradually recommence activities, including different functions, building them up to one year following the surgery.”
Her surgery was one week after the end of her GCSE’s. She missed out on the celebrations, she did not collect her results from the school. She missed out on the start of her drama course and returned some months after, guarded by a literal circle of friends surrounding her, as she walked slowly and carefully through the crowds of students. Health and Safety assessments guarded her in a more formal manner. A quiet space made available for her to lie flat, a plan for what to do if the fire alarm went off- she couldn’t walk fast and must not be jostled- a modification of drama classes, an awareness that her rods restricted her from bending fully. My daughter is flexible in spirit and mind, her body lags behind.
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 and servant for a while of this. At times it 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, ten years on, she has her scars, the beautiful and striking faded line all the way south and the two ‘tiger slashes’ across the side of her torso. She has answered enquiries about these scars by joking that she was mauled by a tiger. A few people find that more believable than the truth.
My daughter has Kypho-Scoliosis and her treatment was specific to her needs and condition and may not apply to other cases, If you have any concerns about Scoliosis please see your GP or contact a relevant support group or source of information.