Mum of 2lb 6oz premature baby says care at Leeds Children's Hospital was 'outstanding'

Sophia and Edwin Gardiner's tiny baby son Ernie weighed just 2lb 6oz when he was born on August 7 when Sophia was 26 weeks and five days pregnant.

Primary school teacher Sophia, 30, said she and self-employed gardener Edwin, 34, could not have coped during her and Ernie's 115 day stay at Leeds Children's Hospital without the unstinting support of doctors and nurses.

First time mum Sophia said the hospital's Family Integrated Care support showed them how to provide the complicated medical care and syringe feeding Ernie needed while in hospital so they were able to bond as a family.

An outreach nurse is helping the family after they were finally allowed home on November 29 with 17-week-old Ernie, who is still having oxygen support at home.

"We felt lost and didn't know what was going to happen to our little boy," Sophia said. "The care has been outstanding. The nurses and doctors just go above and beyond to help the whole family."

Family Integrated Care is an innovative model of care that aims to support parents and families to become an integral part of their babies care tea.

Parents are encouraged to actively take part in care by taking temperatures, feeding and weighing the baby.

Ernie was born at Harrogate District Hospital after Sophia went into labour unexpectedly.

Within hours mum and baby were transferred to the specialist neonatal unit at Leeds Children's Hospital.

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"The staff at Leeds showed compassion and care from the moment we walked through the ward doors, '' Sophia said.

"Having never been in a situation before where we needed neonatal support, Edwin and I didn’t know what to expect.

"We were thrilled when the staff showed us how to do a ‘containment hold’ through the small incubator doors within moments of arriving.

" Although daunting, we were reassured that this tiny act would give our little boy the support he needed and would let him know that we were there.

"All the staff were keen that Edwin and I were able to bond with Ernie and form a strong relationship with him.

"At seven days old, once he was stable, I was able to hold our son for the very first time.

"It took four people to manoeuvre him into my arms due to all the wires and ventilation tubes, and although fragile, we knew he was getting stronger and it was a moment I will never forget.

"Ernie was on a nasogastric feeding tube for a long time and Edwin and I were shown how to feed him via a syringe and a feeding pump.

"This aspect of family integrated care gave us a feeling of being real parents, even though we were in such a clinical setting and not able to do the usual ‘new parent’ things.

"We were also encouraged to do Ernie’s cares, washes etc, prepare and give his medications and also learn about the monitors and what all the beeping meant!

"Again, this allowed us to feel like we were supporting our son in every way we could.

"The neonatal hospital team became our extended family.

"We will never be able to thank them enough for all the support, care and positivity they showed us through our darkest of days.

"At a time where we felt lost and alone, they gave us the guidance we needed to start to become a real family.

"It was an incredibly long 115 days, but we will never be able to thank the staff enough for everything they did for us."

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Sophia spoke of her experience after Lady Sarra Hoy spoke to Leeds Children's Hospital's Family Integrated Care support team and families during an event at St George's Conference Centre in Leeds.

Lady Hoy, who is an ambassador for neonatal charity Bliss, heard from staff about recent Family Integrated Care initiatives to support siblings of premature babies.

Lady Sarra and cycling legend husband Sir Chris Hoy's son Callum was born 11 weeks early in 2014.

Lady Hoy was told about new initiatives at the unit to support siblings of premature babies.

There are sibling support packs , bespoke activity books, care packages and parent information leaflets.

Lady Hoy said: "Those of us who have been through a neonatal experience are now members of a very special club that stays with us… They’re all different stories but there are certain things that unite us all and that’s what makes us members of the club.

"I think it’s the emotional bonds and the scars that we have experienced - the fear and the hope that live at the same time.

"Time in the neonatal unit is very hard, very difficult and often so frustrating… Sibling Support Packs will help bridge the gap so that all members of the family can be included and supported and feel that inclusion and that support because after all we are all members of this club."

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