Child in a Million: Alex and Matthew on Feb 28

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.

About the author

  • julie

    hi can you tell me if matthew whos story was on the 28th february also has the 22q11 deletion, as this facial features are like my daughters who has the deletion,thank you

  • Tanya

    Yes Julie, Matthew did have 22q11 deletion

  • BBC One
  • BBC Two
  • BBC Three
  • ITV1
  • ITV2
  • 4
  • E4
  • Film4
  • More4
  • Five
  • Fiver
  • Sky1