My Baby's Life: Who Decides?

Incredible advances in medical science's ability to prolong life have huge cost implications for a financially strained NHS but prompt complex questions relating to quality of life. This powerful two-part observational documentary series provides an intimate, sensitive and heart-breaking account of the lives of children who can be kept alive but probably never cured. Filmed over the year when the Charlie Gard case gripped the nation, the programme delves deep into both sides of this emotive debate, asking if it's ever right to let a baby die. Based at Southampton Children's Hospital's Paediatric Intensive Care Unit, it features the parents of children and the doctors who care for them. In episode 1, eighteen-month-old Tallulah was born prematurely at 27 weeks. Her lungs are underdeveloped, so she's kept alive attached to a ventilator. Her parents have lived in hospital with her since she was born, and are determined that she should continue getting treatment. After two years of living in hospital, Tallulah is well enough to go home for the first time, but is still attached to a life-support machine. Who should decide whether her quality of life is good enough to justify the suffering and cost involved in keeping her alive? Max was also born prematurely and lives in hospital connected to a life-support machine. Surviving on the edge of medical technology, Max bounces in and out of intensive care with an uncertain long-term outcome. And Mimi has a potentially fixable heart defect. But before she can get the complex surgery she needs, she would have to live on a life-support machine in hospital for two years. Her parents take the highly complex and extremely difficult decision to withdraw treatment for their daughter, wanting to end her suffering when it is not certain that she can be cured.

In episode 2, Ellie-May, who's 12, has multiple, complex problems. Although she's quadriplegic, her mother believes that she has a good quality of life, and has fought the system to get her daughter the treatment she needs to survive. However, the doctors question this. Is her quality of life good enough to justify the suffering and cost involved in keeping her alive? Olly's parents were told that their new baby was likely to have Down's Syndrome, but it emerges that Olly has a very rare, and much more serious, chromosomal disorder. Olly's parents want to do everything to treat their child. Can the doctors get Olly's parents to understand how poor his quality of life is likely to be and look at alternative options? Nine-month-old Tyler will die by the age of two if he receives no treatment for the genetic condition SMA1, which prevents his muscles from working. But the only available treatment is an experimental drug trial in Paris that can prolong children's lives without curing the condition. Will it work for Tyler, and is it right to save a life when we know he will suffer with profound disabilities?

Prod: Sue Medhurst; Dir: Kira Phillips; Exec Prod: Kieran Smith; Prod Co: Love Productions