Whitley Bay mum tells House of Lords the three things she thinks would improve care for extremely premature babies

Whitley Bay mum and neo-natal care writer and researcher Nadia Leake gives evidence to the House of Lords
Whitley Bay mum and neo-natal care writer and researcher Nadia Leake gives evidence to the House of Lords -Credit:House of Lords

A Whitley Bay mum gave evidence to the House of Lords this week about how difficult having extremely premature babies can be - and making three vital recommendations she thinks could change lives.

Now a PhD candidate at Newcastle University preparing a doctorate about neo-natal care, Nadia Leake gave birth to twins Raif and Harrison eleven years ago at just 22 weeks, while visiting family in London. Heartbreakingly, Raif died aged just three weeks.

Eventually, after a total of 20 weeks in hospital, Nadia and husband Martin were finally able to take Harrison home. Since then, Nadia wrote the book Surviving Prematurity - and has become an expert on the topic.

In that capacity - along with author Francesca Segal - she gave evidence to the House of Lords' Preterm Birth Committee which is investigating the issue. Both women spoke movingly about how "family-integrated care", which means ensuring that parents are intimately involved in their baby's care, can stay with the baby as much as is physically possible and are able to hold the baby, among other measures, was vital.

She said: "It really makes that much difference. A difference to myself, is lovely, but what family integrated care does is provide a difference to the baby. They are tangible outcomes from clinical studies."

She said these benefits included improving a child's weight gain, a reduction in infection risk, and making it less likely that a premature baby would suffer from blindness associated with oxygen deficit. Nadia said it also supported maternal mental health.

In illustrating her evidence, Nadia gave a heartbreaking example from her own experience - explaining how when, following Raif's death, Harrison had become ill enough to require being transferred across London, there was not the opportunity to accompany him in the ambulance.

She said: "We were told as he was being transferred that he might not survive the journey, and we weren't allowed in the ambulance. And so we got a tube, not knowing if we would get from Hammersmith to Great Ormond Street with a surviving child or as bereaved parents."

Nadia said this was an example of how parents could be excluded from being with their children. Francesca, a mum who also gave birth to extremely premature twins, spoke of how parents could be seen as "nice to have" but not essential during a baby's care - and both women said this must change.

Speaking about the impact being parents in this situation had had, Nadia added: "Our mental health took an extraordinary dip and it was for reasons it was so hard to explain. The death of one child is one thing not being able to parent and mother your baby is akin. So, we were in a very bad state, when really the worst had already happened. "

Overall, Nadia made three recommendations to the committee. - to make sure that family-integrated care is policy around the UK, to create new neo-natal units which, most importantly, have space for parents to stay alongside the babies, and to ensure that education for neo-natal staff encompassed a family-focussed approach.

Lord Patel, chairing the committee, paid tribute to both women. He said: "We have learned so much from you. In fact, your stories and your recommendations could simply become the report."