Family Bios

12 March 2018

 

Episode 1

Tallulah (Parents: Rianna & James)

Tallulah is two years old and was born very premature. Her parents lived in hospital accommodation for the first two years of Tallulah’s life as she never left the hospital. Tallulah is ventilated via a tracheostomy and her parents want to do everything possible to keep her alive. There are big questions around her quality of life and the cost of her care package. By the end of the episode, Tallulah does manage to get home. She is still connected to a ventilator and supported by a team of carers but she looks happy.

Mimi (Not her real name and parents wish not to be identified)

Mimi is an eight-month old baby girl.  She has a pote­ntially fixable heart problem but before she is big enough to operate on, she would need to have a tracheostomy and live in hospital for two years while she grows. This is a very rare case where the parents feel more strongly than the doctors that withdrawing care is in her best interests, as they don’t want their daughter to suffer for an uncertain outcome. The doctors are clearly uncomfortable with this at first, but support the parents in their decision and Mimi has her ventilator removed.

Max (Parents: Hannah & Wayne)

Max is nine months old. He was born very premature and is unable to breathe on his own. He has a tracheostomy but continues to bounce in and out of the Paediatric Intensive Care Unit (PICU) on the edge of life and death. Max’s parents are optimistic about his outcome but doctors don’t think that he will ever leave hospital. Towards the end of the episode, it is discovered that he has a rare heart condition and is given months to live.  

Episode 2

Ellie-May (Mum: Cathy)

Ellie-May is a 12-year-old girl with a multitude of complex problems including: quadriplegic spastic cerebral palsy, diabetes and organ failure. She is in-and out of PICU. Familiar with standing up to medical specialists, having fought for Ellie’s care in the past, her mother argues she has a fantastic quality of life and deserves every intervention available. The doctors question this, with some believing that her suffering is too great when she is ill and that palliative care would be a better option. Ellie-May recovers from her admission on this occasion and we see her laughing joyfully at home.

Tyler (Parents: Lisa & Louis)

Tyler is a nine-month-old baby with Spinal Muscular Atrophy type 1 (SMA1), an incurable genetic degenerative condition that he will die from by the age of two. An experimental treatment is trialled in Paris, and the parents self-fund several trips in the hope of a cure. The UK doctors are not certain that this treatment will work, but allow the family to join the trial. By the end of the episode, the experimental treatment appears to have had little or no effect on Tyler.

Olly (Parents: Carly & Gary)

Olly is a three-week old baby with an extremely rare chromosomal abnormality. His parents begin their journey by wanting everything possible to be done for him, but as the extent of his problems emerges, they take the unexpected decision to allow him to die.