breaking bones to change your height

by Jenny Bryan

At 16 and 4ft 9in tall, Emma was shorter than the eight-year-old daughter of the orthopaedic surgeon she was referred to. It was only when she took off her high-heeled shoes that he realised the extent of her problem.

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Short since infancy, Emma had become more and more depressed and withdrawn as a result of her height as she got older. She didn't want to go to school and always felt left out. Her dream career among the cabin crew of an airline was out of the question.

'I was picked on at school and tapped on the head all the time. It just got to me,' she says.

At 6ft 3in, 25-year-old Kirsty was also so upset by her height that she sought medical help, near her home in Norway.

'I started to worry about my height when I was a teenager. I was always a head higher than my friends and it worried me a lot. Some people made ugly comments and others just stopped in the street and looked from my shoes to the top of my head and said, 'Wow!' You can make a joke about it, but I didn't feel very good.'

Both Emma and Kirsty decided on drastic action to change their height and embarked on surgery which, at the very least, would be painful and, if it went wrong, could leave them with permanent disabilities. Emma's surgeon broke her thigh bones in two places and fitted her legs with medieval looking stretching frames that forced her bones to grow 4in, while Kirsty's surgeon carved 3in out of her thigh bones.

why people don't grow

Most people who are short or tall have followed in the footsteps of their parents. They inherited a tendency to be shorter or taller than average. But, in a small number of cases, genetic or growth problems are responsible for unusual height.

Children grow in response to a hormone, called growth hormone (GH), produced by the pituitary gland in the brain. Most grow by about 5cm per year, with an additional growth spurt around puberty.

Bone growth occurs at the growth plates (epiphyses) at each end of the long bones. Once these plates close, during adolescence, no further growth occurs. It is therefore important to identify any growth problems which are likely to respond to GH treatment as early as possible.

GH deficiency is hard to measure with a simple blood test because even normal levels are virtually undetectable. Instead, specialists measure hormone levels in response to GH stimulation tests and they can measure another hormone, called insulin-like growth factor (IGF₁), which is produced by the liver in response to GH.

Diagnosis requires regular measurements of a child's height and weight, monitoring of their eating and exercise patterns and checking for any social problems which could be contributing to a failure to grow. An X ray of the left hand and wrist is a good indicator of bone development and can be used to help with the diagnosis.

If GH deficiency is discovered, it can be treated with injections of synthetic GH.

GH is also used to treat a genetic cause of female growth problem called Turner's syndrome which is due to loss of part or all of one of the X chromosomes. Although the condition is not caused by GH deficiency, it responds to GH treatment.

taller than average

While most people are tall because their parents were of above average height, a small number produce excessive amounts of GH, usually because they have a tumour in their pituitary gland. Occasionally such tumours occur in children, resulting in excessive growth – a condition called gigantism. More commonly, pituitary tumours occur in young adults and, since the ends of the long bones in the arms and legs have closed by this age, hands, feet and facial bones may become enlarged, with swelling of surrounding tissues. This condition is called acromegaly. Pituitary tumours are usually diagnosed from symptoms, GH tests and brain scans, and treated with surgery, radiotherapy and/or drugs.

Other rare causes of excessive height include genetic disorders such as Marfan syndrome and Klinefelter syndrome.

bone surgery

When doctors assessed Emma and Kirsty's height problems, they decided that surgery was the only option.

For Emma, this meant lengthening the bones in her thighs using a technique based on a procedure originally devised in the early 1950s. Before her surgeon would consider the operation, he made sure that Emma knew exactly what she was letting herself in for, and she was assessed by a psychologist to prepare her mentally. Some of her friends thought Emma would chicken out at the last minute, but she was very determined.

Under a general anaesthetic, her thigh bones were broken in two places, and pins inserted on either side of each break. A metal frame called a fixator was then fixed onto the pins. Each day, Emma wound the fixator to pull the pins apart and slowly widen the gap between her broken bones, by about 1mm per day. New bone then grew into the gap to mend the damage.

Once the pins and fixator are in place the procedure is surprisingly painless. Turning the pins does not hurt, even though they are gradually dragged through the skin and soft tissue lying over the bone. All that people like Emma feel is a slight vibration if they tap the pins.

It is essential that they keep the wound sites scrupulously clean as an infection can jeopardise the whole procedure and mean that the pins have to be removed.

Emma kept turning the pins in her legs for between four and five months, during which time she was bed-bound and unable to do anything for herself. She lived and slept in the living room of her parents' home. Once she had stretched her bones to the desired length there were more weeks of waiting while the bones finished healing before the fixators could be removed. There were also weeks of physiotherapy and exercises to get her legs back into working order. A fall cracked one of the delicate bones but, fortunately, no lasting damage was done. Emma is in no doubt that the months of immobility were worth it:

'The actual operation has changed my life completely. I'm so happy now, I can go out and enjoy myself without people saying, "She's short". I can walk down the street and not feel 11 any more. I feel 16 and I love my life now,' she says.

Kirsty is equally pleased with the results of her operation. She too can walk down the street, without stares and gasps from passers-by. Her surgeon cut a 3in segment out of the inside of her thigh bone and a matching segment on the other side 3in further up, so that the remaining pegs of bone slotted together. Metal plates fixed the broken bones together and allowed them to heal, and then Kirsty underwent a rigorous exercise programme to build up the muscles and support tissues in her thighs.

Today, she has no regrets about her operation and judges it a complete success. The scars on her legs are hidden by trousers and skirts and, as she points out, Norwegian women don't get the opportunity to wear bikinis very often.

radical treatment

Some people would balk at the bone lengthening or shortening operations that Emma and Kirsty are so pleased with. Emma's own sister, for example, who is also short, will not consider leg lengthening surgery, having watched what Emma went through. But others are undergoing even more demanding bone surgery to shape their bodies. They have bones removed from long or misshapen toes so that they feel more confident in the latest strappy sandals and some have had ribs removed to make their waists smaller.

Demand for the perfect body has never been greater and there seems to be no end to what some dissatisfied people are prepared to ask for – and endure.

help and info

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organisations

Klinefelter Organisation
234 Turton Road
Bolton BL2 3EE
E-mail: ko.info@talk21.com
Website: www.klinefelter.org.uk
A membership-based organisation that provides information about Klinefelter's Syndrome, plus a medical links section. Membership offers a quarterly newsletter and access to meetings.

Marfan Association UK
5 Aldershot Road
Fleet GU51 3NG
Tel: 01252 810472 (Mon-Fri 9am-5pm)
E-mail: support@marfan.org.uk
Website: www.marfan.org.uk
Involved in research and raising awareness about Marfan Syndrome. The Association offers a support helpline for both families and people with the condition and there are information booklets available.

Pituitary Foundation
PO Box 1944
Bristol BS99 2UB
Helpline: 0845 450 0375 (Mon-Fri 9am-5pm)
E-mail: helpline@pituitary.org.uk
Website: www.pituitary.org.uk
Provides information and support to those with pituitary disorders, their relatives, friends and carers. The helpline number can put callers in touch with a 'telephone buddy'. The buddy will be a patient, carer or professional who will give information, advice and support, and be available for the caller to speak to again should they need to. Also provides details of local support groups.

steps
Helpline: 0871 717 0044 (Mon-Fri 9.30am-4pm)
Tel: 0871 717 0045 (admin)
E-mail: info@steps-charity.org.uk
Website: www.steps-charity.org.uk
Charity that aims to help people with lower limb conditions. Provides support for families and individuals with services such as a helpline, discussion forum, annual events, publications and leaflets.

Turner Syndrome Support Society
12 Irving Quadrant
Hardgate
Clydebank G81 6AZ
Tel: 01389 380385 (Mon-Fri 9am-5pm)
E-mail: Turner.Syndrome@tss.org.uk
Website: www.tss.org.uk
Offers support, information and advice to gto those with Turner Syndrome, their families, friends and health professionals. Produces a wide range of informative resources including online literature, leaflets and videos.

websites

Child Growth Foundation
www.heightmatters.org.uk
Provides support to parents of children with growth disorders. The site gives practical information and advice to help parents understand diagnosis and treatment. There is an e-mail link directly to online specialists.

Human Growth Foundation
www.hgfound.org
Interactive US site aiming to help the parents of children, and adults, who have disorders of growth or growth hormone, through education, research, support, and advocacy. Has a range of information on growth problems and chat rooms enable parents of children with growth problems to communicate with each other.

Limb length difference and limb lengthening
www.ich.ucl.ac.uk/factsheets/families/F000292/index.html
Leaflet from the UCL Institute of Child Health explaining about limb lengthening and deformity correction: the reasons why it may be needed, and how to keep life as normal as possible during the lengthening process.

Magic (Major Aspects of Growth in Children)
www.magicfoundation.org
US site with information on growth hormone deficiency and a variety of factsheets on growth concerns. The section 'kids pages' has some articles written by children with growth problems and gives details of a penfriend scheme.

Motives for growth-enhancing hormone treatment
www.biomedcentral.com/1471-2431/5/15
Article from BMC Pediatrics 2005 examining the motives of adolescents and their parents when choosing growth-enhancing hormone treatments.

Short Persons Support
www.shortsupport.org
Provides support and reference material to persons of short stature and aims to inspire short people to better their lives and attitudes. The website includes information about cosmetic leg lengthening procedures.

The Tall Persons Club GB & Ireland
www.tallclub.co.uk
Site dedicated to people whose height is an issue in their life. Information, support, product information and medical news for all tall people.

reading

The Pituitary Gland and its Hormones by The Pituitary Foundation
For a copy of the leaflet send an SAE to PO Box 1944, Bristol BS99 2UB or visit the website
www.pituitary.org.uk/resources/pit-gland.htm.

(January 2003, resources updated January 2005)