Mother wins campaign to treat premature babies with dignity

A mother whose son was born at just 22 weeks has won a campaign to have hospitals treat other such children with dignity.

Emma Jones’ son Riley was born in 2013 and even though he was breathing independently, staff at a Cardiff hospital did not help him. He died after 93 minutes.

Previously in Wales, there was no guidance for what doctors should do if a baby was born alive prior to 24 weeks. But following Emma’s case, the Welsh Government has introduced guidelines to ensure medics provide care and that families are involved in decisions.

Respect

In addition, every health board in Wales now has a bereavement midwife leader who will promote best practice.

Emma said she is so glad the change will benefit other babies, and even if the children do not survive, “they all deserve to be treated with respect and their parents given the help and support they need”.

Talking about her son, Emma said: “He was tiny but perfectly formed – all his features were there, he was just half the size of a normal newborn and fitted into the palms of my hands.”

Families involved

A petition she organised, signed by over 2,500 people, led to a Welsh Assembly committee asking a minister to act.

Now the Government has set out guidelines in a Welsh Health Circular stating that where a baby is born ‘on the threshold of survival’, midwives should speak to specialists to make sure medical assessments are carried out.

I know not all will survive but if it just helps a few, it will be worth it.”

Emma Jones

“Additionally”, the Government adds, “the family of the baby will be involved in the decision making about ongoing care”.

Painful experience

The Chief Medical Officer for Wales, Dr Frank Atherton, said: “We are very grateful to Emma Jones for sharing her painful experiences with us”.

Emma said: “I can’t express how glad I am that these changes have been brought in.

“It brings me to tears – I always wish that someone had done it so it would have benefitted my Riley.

“Now I have done it and it will help other babies. I know not all will survive but if it just helps a few, it will be worth it.”

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