'We will watch our child's fight for life'

By Jane Elliott
Health reporter, BBC News

Tahlia was fighting for breath

Alison and Paul Lovegrove will this week force themselves to watch what for them will be the most distressing television ever - images of their one-year old daughter desperately struggling for breath and life.

Tahlia was born with a condition called long segment tracheal stenosis (LSTS), which left her windpipe or trachea dangerously narrow - the condition is so rare it affects only one in five million.

Alison and Paul are also steeling themselves to see Tahlia's delicate five-hour operation for the first time, as her fight for life is screened as part of a series centred on the world renowned Great Ormond Street Hospital (GOSH).

"A child in a million' spent six months following 13 children, their families and the medical teams, at the London hospital.

Cathartic

"Watching this will be an important part of the process in how we deal with what happened to Tahlia," said father Paul.

"The longer we have Tahlia with us the more horrific it is that we could have lost her."

Watching this will be an important part of the process in how we deal with what happened to Tahlia Paul Lovegrove

Just days before her first birthday Tahlia woke up in her Brighton home struggling to breathe.

She was transferred from her local hospital to Guys and St Thomas' London and from there to GOSH - the only hospital in the UK able to treat children with LSTS.

Here Professor Martin Elliott, paediatric heart and lung specialist, carried out her surgery, last July.

Six years ago, Prof Elliott and his team revolutionised the way this disorder is treated.

Previously, many children with Tahlia's condition died. The pioneering surgery shortens and widens the trachea.

Tahlia's trachea was particularly narrow, posing a big challenge for Prof Elliott and his team.

The normal size of a trachea is 6-8mm - over three times the size of Tahlia's at the time of her operation.

A major blood vessel from the heart to her lung was also hooked around the trachea and had to be repositioned.

Professor Elliott's team used an ECMO (extracorporeal membrane oxygenation) machine to keep Tahlia alive until they could operate.

The device replaces oxygen and removes carbon dioxide as the patient's blood is pumped through it.

"The condition LST is very rare and until the 90's most children used to die," said Professor Elliott.

"And because of this we have no idea about what the long-term need for follow-ups will be, but we know she will need regular checks."

Recovery

Paul Lovegrove said the days following her procedure were critical, as Tahlia learned to breathe on her own.

The operation went well and despite some initial problems adjusting to breathing unassisted, her parents were able to take her home to Brighton a month later.

"It was wonderful to bring her home, if not a little daunting at first.

"Now that she is off all medication and back to her old ways, we often forget what she has been through.

"We were able to remove her naso-gastric feeding tube by the end of August and since then she has been able to recover her substantial appetite!

Molly's parents say the programme will be a tribute to her life

"Tahlia is an amazing child and really enjoys life. We could not have wished for a better recovery than she has made."

Tahlia receives regular check-ups at GOSH and at her local hospital and although her breathing is not perfect, Tahlia's trachea is much stronger than it was before her treatment.

Later this year, Paul Lovegrove is taking part in a half marathon and a triathlon, both to raise money for Great Ormond Street Hospital for Children NHS Trust.

The first episode will also feature the story of Molly, aged four, who needed surgery to remove three cancerous tumours from her lungs.

Sadly the tumours returned and she died, but her parents have asked for the programme to be screened as a tribute to their daughter's life.

'Child in a million' will be screened on Wednesday 21 February at 2000 GMT, on Five.