Child in a Million

child in a million(6/6)

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.

child in a million(5/6) 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. Cameras follow 13 children and their families as doctors diagnose and treat their conditions using cutting-edge techniques. In this programme, two young brothers undergo cornea transplants in a bid to gain some sight, and fiveyear-old Luka fights liver cancer.

Brothers Sandip, four, and Jaydip, 18 months, were both born virtually blind with the same rare eye deformity that means their corneas are severely clouded. Ken Nischal is one of only a handful of surgeons willing to perform a cornea transplant on such young patients, and Jaydip has already had one successful cornea graft, when he was just six months old. Mr Nischal now wants to tackle the other eye, but a shortage of donor tissue means that Jaydip has been on the waiting list for almost a year. His older brother has not undergone any surgery but is now also awaiting a graft.

After many months of waiting patiently, the family finally get a phone call saying that two suitable donated corneas have become available. There is no time to waste: the two operations will take place at Great Ormond Street the next day, so parents Ranjit and Dilip must make the necessary preparations. Having been warned that the operations are not straightforward, with the risk of one or both boys losing an eye, they are understandably anxious. For his part, surgeon Mr Nischal is humbled by the couple’s efforts to improve their sons’ quality of life. “When you think about the dedication, the hardship and the complete single-mindedness of the mother and father to look after these two children, you begin to realise what parenthood’s about,” he says.

Another couple pinning their hopes on Great Ormond Street are Sanja and Branko, who have travelled all the way from Serbia for their five-yearold son Luka, who has a malignant tumour in his liver. This type of cancer in children is thankfully rare, and Luka’s tumour was only spotted when he had an ultrasound examination after a minor car accident.

The first stage of treatment for liver cancer involves several courses of chemotherapy to shrink the tumour before removing it with surgery. The chemo usually comprises a combination of two drugs, with possible side effects including damage to the heart, kidneys and hearing. But in Luka’s case, consultant Penelope Brock proposes using just one drug –Cisplatin –in order to minimise these side effects.

The chemo will be followed up with a long and complex operation. “I hope it’s the end of our nightmare,” says mum Sanja. But she will only find out for sure after an anxious wait for the results of Luka’s pathology tests…

child in a million (4/6) 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. Cameras follow 13 children and their families as doctors diagnose and treat their conditions using cutting-edge techniques. In this programme, we meet Ellie and Kody.

Twelve-year-old Ellie was born with a rare genetic condition which caused abnormal restraints on the growth in her skull. Great Ormond Street sees about eight cases of Crouzon Syndrome a year, and today Ellie needs a complex operation to relieve the pressure on her brain caused by underdeveloped bone. “I can’t close my eyes properly because my eye socket is too small for my eye,” she explains. “You can’t sleep well at night, you can’t breathe properly, and bright lights really affect me.”

Having first undergone surgery in infancy, most Crouzon sufferers will wait until their late teens to go through the painful next step. Ellie’s condition, however, is serious – the pressure on her brain is growing, and recently caused her eye to pop out of its socket. Dad Robert, who shares her condition, is anxious about his daughter. “It is a big op,” he says. “It’s frightening.”

The procedure involves cutting through the front part of Ellie’s skull, and mobilising the bones around her forehead, eye sockets and cheekbones. An external brace is then fitted around her head with screws that will slowly draw the bones outwards, releasing the pressure on her brain and creating a more regular facial structure. This surgery is not without risks, and will necessitate even more surgery in the future, but Ellie is in the safe hands of pioneering cranio-facial consultant David Dunaway. For added reassurance, she wears her lucky gold hat into hospital.

After eight tense hours, Ellie’s parents are given the good news – the surgery went well. She now faces a long and difficult recovery, after which she will feel –and look –very different. Her mum Louise thinks her daughter looks amazing. “I was very concerned that after the operation, Ellie would no longer be Ellie,” she says, “but I’m happy to say that she is very much Ellie again!”

Having gone through weeks of pain, Ellie is apprehensive about seeing herself for the first time, but is almost overwhelmed when she holds up a mirror to her bruised but smiling face. “I didn’t know it was going to be this nice!” she gasps.

More than a thousand children are referred to Great Ormond Street’s Ear, Nose and Throat department every year, and one-year-old Kody is one of the youngest. Born with a rare lymphatic disorder causing massive swelling in his neck, mouth and face, he suffers numerous difficulties in breathing, eating and talking, and needs several operations. In this programme, we follow his progress as consultant Doctor Hartley reduces his swollen, protruding tongue.

child in a million(3/6) 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. Cameras follow 13 children and their families as doctors diagnose and treat their conditions using cutting-edge techniques. In this programme, we meet seven-year-old Kyle, who has an extremely rare immunodeficiency disease, and 17-year-old Leanne, who suffers from pulmonary hypertension.

Young Kyle’s condition, CD40 ligand deficiency, is found in only one in a million male births. It makes him highly susceptible to infection, and his lungs and liver have already been damaged. But Great Ormond Street now offers the hope of a cure, in theform of a bone-marrow transplant. A matching volunteer donor has been found and hopes are high, but there is no getting away from the fact that this will be a risky procedure. “We’ve given him a 50% chance of success, which is not good,” admits consultant Paul Veys.

Before the transplant, Kyle must undergo chemotherapy to prepare his body. A new therapy using two relatively gentle drugs will mean chemo can be kept to a minimum, but Kyle’s immune defences will be weakened to prevent the rejection of the new cells. This means he will be extra vulnerable to potentially life-threatening infections. “Even though you know it needs to be done, you can’t say you’re ever ready for it,” says distraught mum Gloria as she sees Kyle in pain and throwing up.

After 24 hours, Kyle is moved to a specialist isolation ward where he and his mother will live for a month, keeping a video diary to chart their feelings and experiences. Gloria says that she and her husband are always very honest with Kyle about what his treatment will entail. “We couldn’t put him through all this without him knowing what was involved,” she insists.

Finally, it’s the big day when the bone marrow is introduced into Kyle’s blood via a drip. “It’s a very big fight for me,” Kyle realises. He is right, since this stage of the treatment brings new risks: the donor cells could fight Kyle’s own cells and attack his weak liver and lungs It will be two weeks before tests reveal whether the new cells have taken. Meanwhile, there is the constant risk of infections, so Kyle is confined to the isolation ward.

Despite the family’s optimism, the results of the lab tests are disappointing. “We are not seeing any donor cells at the moment,” admits Paul Veys. It’s left to a tearful Gloria to tell Kyle that they are back to square one. She is wary of giving the gruelling procedure another go, so all that remains at the moment is for her and her husband to help their spirited son live life to the full.

Tonight’s programme also follows 17-year-old Leanne, who suffers from pulmonary hypertension. This rare condition affects her lungs and puts pressure on her heart. Left untreated, it would probably have killed her within three years. Now, she is fighting a daily battle to stay alive.

Up until the age of 13, Leanne was the picture of health. “I was such an active, super-fit person,” she says. “To wake up one morning not being able to breathe or climb the stairs… Wow, it was a shock.”

There is no cure for Leanne’s condition, although a range of treatments help her manage it. She may need a lung transplant in the future, but this is a high-risk operation. For now, she follows a strict regime of tablets. In addition, the medication needed to open up the blood vessels in her lungs must be administered to her system directly throughout the day. A small pump pushes the medication through a tube that enters Leanne’s body via a needle stuck into her stomach tissue. Every ten days, Leanne must reposition the needle to keep the drug diffused throughout her body –a painful procedure.

But administering drugs this way seems to be getting less effective for Leanne, and her health is declining. Luckily, another visit to Great Ormond Street throws up a whole new procedure that promises to improve the quality of Leanne’s life…

Wednesday Feb 28
child in a million alex and matthew (2/6) 20.00–21.00

This new series of observational documentaries explores a variety of rare and complex medical conditions and pioneering treatments at one of the most famous children’s hospitals in the world – London’s Great Ormond Street. Filmed over eight months, the series follows 12 children and their families at home and in the hospital, as doctors diagnose and treat their conditions using cuttingedge techniques. In this programme, we follow sixyear-old Alex, who has a bone disease so rare only 200 cases have ever been recorded, and 11 yearold Matthew, who has flown in from New York for life-saving heart surgery.

Doctor Penelope Brock has been treating Alex since his diagnosis and referral to the hospital. He has Gorham Stout syndrome, or ‘vanishing bone disease’ –an inflammation inside the bones which causes the destruction of normal bone tissue. He has already undergone surgery to remove his lower jaw, and has been given a tracheostomy to ease his breathing. The next steps, however, are less clear.

In her 25 years as a paediatrician, Dr Brock has never seen the condition before, and she is forced to return to her medical books in an effort to find the best course of treatment – there is no conventional cure. Comparing the condition to some forms of cancer, she decides that a combination of steroids and chemotherapy will give Alex the best chance of survival. “He’s a guinea pig really,” says his mother, Tammy Stoakes. “If he’s going to be my little miracle, then he’s in the right place.”

Dr Brock remains optimistic but highlights the desperation of Alex’s case. “We had to do something to stop the progression of the disease or it would become life-threatening to him,” she explains. Alex already endures a punishing daily routine involving regular dressing-changes and vast quantities of medicines, but he is now admitted to hospital for chemotherapy. On his arrival, however, there is a worrying discovery. A large piece of bone has become exposed inside his mouth, considerably raising the chances of infection. Despite the risk, craniofacial consultant David Dunway decides that the treatment must continue.

After six weeks of intensive treatment, Dr Brock decides to reduce Alex’s medication – but he doesn’t react well. His jaw begins to swell and he is readmitted. Alex’s family then awaits the results of a new MRI scan, which will reveal if the disease is back under control. The results are mixed: the disease is still active, but Dr Brock’s medication appears to be keeping it at bay.

Another child requiring the expert attention of Great Ormond Street’s doctors is 11 year-old Matthew, born without a pulmonary valve and now requiring urgent surgery to replace it. His parents have re-mortgaged their house to fly with him from New York, where the only treatment available is a painful operation with a lengthy period of recovery. Time is running out for Matthew, whose father explains why the failing valve is so dangerous. “If we don’t do something now,” he says, “the heart could deteriorate to the point where blood would flow back up into the lungs.”

At Great Ormond Street, however, an amazing technique has been developed that will spare Matthew any painful surgery. Paediatric cardiologist Professor Philipp Bonhoeffer has designed a revolutionary method of replacing the pulmonary valve through the patient’s leg. Using a stent and a small balloon, the valve is inserted into a vein in Matthew’s thigh and guided up to the heart during the operation.

A few months later, Matthew is back home in New York playing baseball with his older brother. Alex, meanwhile, is doing well on a reduced level of medication. He has had his hated tracheostomy removed, and the doctors of Great Ormond Street have given his family hope.

wednesday, 20.00–21.00 on FIVE

This new series of observational documentaries explores a variety of rare and complex medical conditions and pioneering treatments at one of the most famous children’s hospitals in the world – London’s Great Ormond Street. Filmed over eight months, the series follows 12 children and their families at home and in the hospital, as doctors diagnose and treat their conditions using cuttingedge techniques. This opening programme features Molly who suffers from a rare form of cancer, and Tahlia, whose windpipe is so narrow she can barely breathe.

Four-year-old Molly has a form of kidney cancer called Wilms’ tumour. The condition is normally found in younger children and is relatively easy to treat, but the cancer has gone unnoticed in Molly for so long that it has spread to her chest. Having already been through months of chemotherapy and had one kidney removed, Molly now has three life-threatening tumours which surgeons must remove. But none of this seems to daunt Molly who remains happy and talkative at all times. “As ridiculous as it sounds,” says Rob, Molly’s dad, “you get by through the strength of your child.”

Molly’s consultant at Great Ormond Street is Gill Levitt, a specialist in Wilms’ tumour who has worked at the hospital for some 20 years. She explains that the tumours in Molly’s chest may still be active, but surgery to remove them would be life-threatening. Due to the proximity of one of the tumours to the heart, in fact, surgery may not even be possible. Levitt hopes that a new scanning technique – only recently being tested on children – will reveal if the tumours are active, without the need for invasive surgery.

Two days after Molly’s scan, it seems that Levitt’s technique has worked, but the news is not good. The cancer in Molly’s chest is still active, despite the chemotherapy, so she is booked into surgery with Professor Martin Elliott, one of the hospital’s top surgeons. Elliott and his team plan two operations to remove the tumours, but they are well aware of the risks involved. Because one of the tumours is so close to Molly’s heart, it may be too risky to remove it. The only way to find out for sure, however, is to go ahead with the operation. “It remains one of those rare bits of surgery in the modern era,” Elliott explains, “where you can only find out by doing it – which is not an ideal situation.”

As the surgeons prepare for the first of the operations, it is a very stressful time for Molly and her parents. Rob and Emma, Molly’s mum, try to remain strong for their daughter, knowing all the time that her life hangs in the balance. Dr Levitt remains positive, but admits that if the surgery fails, “we’re in serious trouble.”

Great Ormond Street does not have an accident and emergency department, so when a child arrives by ambulance, it can only be a very serious case. One-year-old Tahlia has been rushed to the hospital with breathing problems, and is taken immediately into the critical care unit while her parents look on. It is only now that Alison and Paul discover that their daughter suffers from longsegment tracheal stenosis – a condition that means her windpipe is very narrow in places. The disorder, which can be present at birth or be acquired through trauma or infection, is so rare that only one in five million people suffer from it.

Many children in the past have died from Tahlia’s condition, but Professor Elliott and his team changed all that with a revolutionary new surgical technique that shortens and widens the trachea. Tahlia’s situation, however, proves a challenge even for Elliott’s team. As she is rushed into theatre, the surgeons discover that Tahlia’s windpipe is less than a third of the size of that of a normal child. With a tube just 1.8 millimetres thick through which to breathe, Elliott reflects, “it’s incredible this child is alive.”

Sadly, after successful surgery to remove Molly’s tumours, the cancer returned and she died at the end of 2006. Her parents have asked for the programme to be shown as a tribute to her life.

Coming soon…

This brand-new observational series follows 12 children undergoing treatment at the world-famous Great Ormond Street Hospital. We join the children and their families both at home and at the hospital, as doctors attempt to diagnose their conditions and work out how best to treat them using cuttingedge techniques.

In the first of six programmes, four-year-old Molly faces life-threatening surgery to remove three cancerous tumours from her lungs. And one-yearold Tahlia is rushed into the hospital struggling to breathe. It turns out that ground-breaking surgery on her windpipe is her only chance of survival.

In later programmes we also meet children including six-year-old Alex, whose life-threatening disease has caused half his jaw bone to disappear; one-year-old Kody, born with a rare lymphatic disorder that causes his tongue to protrude; and five-year-old Luka from Serbia, who has a very rare type of liver cancer.

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