Pregnancy and scoliosis

Shanta Everington, a first-time mother with idiopathic scoliosis, explores issues about pregnancy, childbirth and scoliosis.

Like most first-time expectant mothers, I approached my antenatal booking appointment with a mixture of excitement and trepidation. This session was supposed to provide the midwife with the necessary information to plan my antenatal care and labour.

She ran quickly through a standard list of questions.

“Are you disabled?” she read out and answered, “No”, without even looking up.

“Er, well …” I began. It was a question I always found difficult.

The disability question

As a teenager, I developed idiopathic scoliosis – a progressive curvature of the spine. Now in my 30s, my spine is S-shaped and my ribcage rotated, with twisted vertebrae and uneven muscle development causing chronic muscle fatigue and pain.

I hadn’t even considered the disability question until suffering severe pain at work several years ago. When I started investigating possible solutions, I came across the government’s Access To Work scheme for disabled employees.

I remember spluttering down the phone “I’m not sure if I count as disabled but …” On explaining I had scoliosis, I was told “Yep, that counts”. It felt strange to start thinking about myself as disabled, but also liberating: I felt entitled to expect society to make adjustments.

Yet this midwife was making assumptions about me because I didn’t match her ideas about disability. When I explained my scoliosis to her – my anxieties about how this might interact with my pregnancy, and about locating an epidural should this be necessary – she simply said “Oh, I had another mum with scoliosis and she managed a natural birth. You’ll be fine”.

My confidence in her was overshadowed by concern that again she was making assumptions. Just because I shared the same condition with another woman, who could say that our pregnancies would go the same way?

I asked about antenatal classes and exercises, and possible additional support. The midwife suggested I seek advice from a scoliosis specialist if I had any worries.

Back to square one

My physiotherapist at the specialist orthopaedic clinic I attended regularly was nervous about me continuing my daily exercise programme, telling me not to do the exercises lying on my back. She suggested that I consult the maternity unit of my hospital. Back to square one!

Like so many other disabled women, I was left to find my own information and support on my pregnancy.

Prepregnancy fact-finding

Before my husband and I decided to try for a baby, I obtained a booklet on scoliosis and pregnancy from the Scoliosis Association UK. This addressed three main questions: how scoliosis affects pregnancy, the effect of pregnancy on scoliosis, and the likelihood of scoliosis being passed on to the baby.

The research appears to be inconclusive but a review of the literature by the Scoliosis Association came to the conclusion that women with scoliosis have a good chance of a normal, healthy pregnancy. Although it is widely recognised that there is a genetic predisposition to adolescent idiopathic scoliosis, more research is needed.

The Association also put me in touch with three mothers with the condition, whose experiences had varied. One found her back pain ceased during pregnancy as the hormones softened her ligaments; another had increased pain caused by carrying the extra weight. One woman’s curve had worsened slightly postnatally and the others had remained the same. None of their children had inherited scoliosis.

Personal experience

We decided to go ahead and my pregnancy went smoothly. Luckily, I also experienced reduced pain as my ligaments softened. I discovered a video on Pilates exercises during pregnancy, which I used for a while to replace my physiotherapy exercises. I also found out by chance that, despite the midwife’s information, a women’s health physiotherapist at the hospital ran an antenatal exercise class, which proved very useful.

In the absence of medical advice, I relied on my common-sense about what I could or couldn’t do safely. I decided to hire a TENS machine and wrote ‘no epidural’ on my birth plan.

Labour was fairly straightforward. Going into labour three weeks early, I contacted the labour unit when I started experiencing contractions as back pain every five minutes. I was told that I could not possibly be in labour if I ‘only’ had back pain and not to come in until the next morning! They said that true contractions would grip the entire abdomen across the front. When the pains were two minutes apart, I decided to go to hospital. My cervix was already 6cms dilated, and our beautiful son, Etienne, was born six hours later. I didn’t experience any contractions across my abdomen …

I had planned for an upright birthing position, but found myself flat on my back, legs in stirrups. This caused severe postnatal pain leading, in turn, to breastfeeding problems.

I had struggled to get the maternity staff even to acknowledge my scoliosis, or tailor my care accordingly. I appreciate that hospital staff are overworked but feel it is important for midwifery practice to be reviewed in relation to women with ‘hidden’ disabilities.

First published in Disability, Pregnancy & Parenthood international, Issue 57, Winter 2007.

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