Child in a Million - Wednesday March 28

child in a million(6/6)
20.00–21.00

This series of observational documentaries explores a variety of complex medical conditions and treatments at London’s Great Ormond Street Hospital. This final programme follows the story of two children suffering from very different conditions: Jessica, a teenage girl with a rare reflex disorder, and newly born Joshua, who will die if he does not undergo heart surgery.

Fourteen-year-old Jessica suffers from a mysterious condition that has baffled even the most experienced doctors at Great Ormond Street. She has a form of reflex sympathetic dystrophy (RSD) which causes pains in her right leg, making it shake uncontrollably. The continuous spasms in her leg mean that normal life has become impossible for her. “RSD has completely changed her life,” explains Sue Maillard, the specialist physiologist treating Jessica . “She’s gone from being a very independent young lady to being immobilised in bed needing to be constantly cared for by her mother.” Jessica’s mother is shocked by the severity of her daughter’s leg movements. “Without exaggeration, it is like wrestling with a crocodile,” she says of the difficulty she experiences controlling her daughter’s convulsions.

As this condition is so rare, Sue Maillard is forced to experiment with ideas to try and help Jessica. She puts the patient under a general anaesthetic and wraps a splint and a cast around her leg to keep the knee and foot in the right position. The team works on Jessica’s psychological response to the pain, attempting to teach her brain to ignore it. Only then will she be able to walk again without her leg twitching.

She wakes from the anaesthetic in great pain, but the splint takes effect and the twitching subsides. She undergoes extensive physiotherapy sessions at the hospital where she exercises both legs in a bid to strengthen the muscles. Sue then places Jessica on a ‘tilt table’ –a sort of stretcher with a foot rest –which goes from the horizontal to the vertical, forcing Jessica to put weight on her right leg and to keep it straight. It is difficult for Sue to force Jessica to straighten her leg when she knows what an ordeal it is for her. “[RSD] is probably the most painful condition there is,” Sue explains. “And painkillers don’t help in this condition.”

Sue knows that if Jessica can force back the tears, quell the cries and brave it out, she will eventually be able to beat this terrible affliction just by the power of positive thinking. Can Jessica overcome the pain and return home to a normal life?

Also in tonight’s programme, parents Karen and Clive are expecting their third child, whom they have already named Joshua. However, doctors noticed a serious heart defect in a routine examination. Joshua is suffering from ‘hypoplastic left-heart syndrome’, a condition in which the left ventricle is underdeveloped and restricts the blood supply to the lungs. When he is born, he will die unless he has an emergency operation to correct his heart. For Karen, there is no option but to allow Joshua to undergo this risky procedure. “While there is hope, I’ll do anything to give my baby a chance,” she says.

About the author

  • Adrienne

    I just wanted to say how devastated I was when I heard at the end of the programme that Joshua had died. I really thought he was going to be ok. I cried and cried. My heart goes out to his parents and their two boys. They came across as being very brave. I have a son of my own, and it just makes me feel so lucky that he is in good health.

  • Peter Mellows

    My daughter (age 29yrs.) has an Arthritic condition known as Psoriatic Arthritis, as well as this condition she also has RSD. Her RSD unlike Jessica’s can appear all over her body. The condition is not very well known in the UK,and there is not a lot that can be done to ease the pain. My daughter had a series of Infra Red scans about 18 months ago, the Infra Red shows up the RSD as “Hot Spots”.
    The symptoms are exactly the same as the young girl on your programme, burning sensations, pins & needles, painful to touch even having a shower is unbearable.
    My daughter is seeing a specialist for her RSD and Arthritic conditions, but there does not appear to be much he can do to alleviate the pain which at times is almost unbearable.
    Thank you for showing the documentary and making people aware of the condition.

    regards

    Peter Mellows
    South Wales.

  • Anonymous

    I had RSD which started in my back and then covered virtually my whole body I am 12 yrs old – so that I was unable to walk sit only lie down and the pain was unbearable all the time – in order to sit I had to concentrate on reciting football players backwards through the alphabet starting at 10 seconds until I could sit for 5 mins it took a while but I got there – I too had to go to GOSH and do a rehabilation programme which consisted of mind over matter and just trying to convince yourself that the pain wasn’t there it took along time and regular daily physio that was 18 months ago – I now am mostly ok occasionally I have a problem in my hand but I know that it is a case of keep it moving and although it kills try not to think about it. The pain is overwhelming and the condition is very hard to explain it took 3 – 4 months to diagnose.

    Hope this is helpful to someone

  • gill

    i all so have rsd in my foot for 3 years i suffer the same as you at the moment am having hbo treament wich is helping quite a lot, more than any thing i have had done i live in lincoln love gill

  • Sue Maillard’s daughter

    I think the program was great! Sue Maillard was brilliant and unfortunatly she went into hospital with sivere tummy ache on the day it was showing. Luckily she was out on the saturday. She knows all about physiotherapy and wanted to be a physio since she was 12. I think she made it great!!!!!!!!1

  • james

    I have had spasm in my left ankle for 18 months now, am in pain and have not been able to go to school. The Dr’s have tried so many different things to fix it and none seems to help, it just gets worse. I hate being like this and hope you get well soon Gill.

  • Peter Jerabek

    The story shows us how NOT to treat RSD now know as CRPS Type 1 & Type 2.
    For them to say Pain killers dont work is ” False & Misleading” and goes against W H O ( world health og ). My wife has CRPS for 7 yrs, the jerks can be treated with spine infusions,if the Pain is not treated, the condition has 70 % chance of spreading to other parts of the body including Jessica hand & face and internal organs.
    It standard medical practice in Australian Hosp to treat as urgent and with strong opioid’s. My wife was on 350mg morphine pr day.
    In Aust the insurance Co approve Morphine infusion pumps into the spine 24 hrs day.What I have seen is horror,with Google there is NO excuse….read http://www.rsds.org.

    RSD is NOT rare, just poorly recognized !!

  • MLB

    hi there to all who have suffered .My 12 year old daughter has spent many months in 3 different hospitals >she has had every scan xray & also mri’s to find this cause.Rsd sounds good but when it came back after approx 3 months we are back to square one.please advise any one that has been sucsessful to this horrible thing .She was a dancer for 7 years and plays sport now before this occured and is a good academic child .Jessica you are both wonderful to allow this to air Thanks .

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