'Miracle' baby born weighing less than bag of sugar and with a hole in her heart

191021 Erin Stones

A baby girl who weighed less than a bag of sugar and had a hole in her heart is now thriving less than a year after being born severely premature.

Claire Stones was just 24 weeks into her pregnancy when she gave birth in December last year

Erin was born weighing just 1lb 10z and unable to breath on her own.In the months that followed the vulnerable baby girl would remain desperately poorly in hospital where she was completely reliant on doctors and nurses to keep her alive.Claire, 39, said: "One of the hardest things about being a parent in the neonatal intensive care unit is the absolute helplessness."All I could do was to sit and watch as these amazing people kept my daughter alive and supported her fight."

Claire, from Tregarth in Gwynedd, north Wales, said she first went into Ysbyty Gwynedd in November 2020 with what she thought was a slight urine infection.Claire said: "They examined me and said: 'Your cervix is open – you're going to have your baby and you're going to have a miscarriage'."At that point I was still at 22 weeks and if she'd been born at that stage she just wouldn't have survived. She was just too small."However when Erin didn't arrive in the 48 hours that followed Claire was transferred by ambulance to Liverpool Women's Hospital, which has higher levels of neonatal care.At this point Claire said every day Erin stayed inside the womb, the greater the chance she had of survival.Claire said: "That week was very important in terms of preparing myself for what was to follow. I was told what was to be expected when she came out."The neonatal team were fantastic and were standing in the delivery suite completely ready for the arrival."When Erin was delivered – weighing less than a bag of sugar – Claire described it as a "surreal" feeling.

Claire said: "It feels like it's not your baby because it's not what you've prepared in your head your whole life."When she was born they took her and resuscitated her and they put a tube in so she was ventilated then she was brought over to me to hold her and have that moment before they whisked her away to have all the wires put in."But at the hospital they really involve the parents in the baby's care so they really encourage you to check the nappies, wash them, and also to hold them as that skin-to-skin contact is so important."Claire said one of the hardest things about the first few weeks in hospital was not being able to see her older daughter Norah, now three, who was across the border in Wales and not allowed to visit."My husband would bring her up to Liverpool and we'd have to stand outside in the freezing cold because there was nowhere to go as everywhere was closed and she couldn't come into the hospital. It was extremely hard."

Claire said all of Erin's organs, especially her lungs, were "massively underdeveloped" which meant she was unable to breathe for herself and was on life support for the first month of her life.She was also treated for 13 different infections.Claire said: "Even when we got her off the ventilator we were unable to bring her breathing support down."She also had lots of different screenings for infections and sepsis. Whenever she had chest infections they would start her on antibiotics again."Erin also had a whole in her heart known as a PDA (patent ductus arteriosus). When babies are in the womb they have the PDA to allow blood and oxygen to pass through but normally when babies are born it closes."With Erin, as she was so early, it just stayed open. They tried to close it with ibuprofen and paracetamol but it just didn't work which caused blood being pumped into her lungs."At just nine weeks old Erin underwent an operation at Alder Hey Children's Hospital to surgically close her PDA.

Claire said: "It was very hard getting emotionally involved [with Erin] in the first few weeks because you knew at any point she could be taken away."When they are that small and that premature they don't give you much hope. All they say is to take each day at a time."I just remember waking up every day and wondering whether she was going to live or die."Doctors said Erin's heart operation went very well – a moment Claire described as "a huge turning point".Claire said: "Even after the surgery they didn't really know what difference it was going to make as her breathing wasn't getting any stronger but it made a huge difference and within a week we were moved back to Ysbyty Glan Clwyd."Claire said Erin was in Ysbyty Glan Clwyd for around six weeks building up her strength and weaning her off her breathing support before being transferred to the special care baby unit at Ysbyty Gwynedd.After more than three months of fighting Erin was finally able to be discharged from hospital and go home on March 28 – six days after her original due date.Claire said: "Seeing my two daughters together for the first time was the biggest thing for me."I remember my husband Ed and Norah coming in to take us home and Norah holding Erin's hand in the car seat. That was amazing," added Claire."Erin didn't give up and neither did the people who worked day and night caring for her and all the other babies on the unit every single day at the most critical of times."These people are way beyond skilled medics and healthcare professionals – they are counsellors, teachers, and friends when the world is a very scary place."

While smiling Erin – now almost 11 months old – is still on oxygen support during the night, there are no issues at all with her heart.

Claire, who decided to share her story to raise awareness of World Prematurity Day on November 17, said: "She's such a little trooper."Even when she's not well she has a smile on her face. She's the easiest baby ever – she's happy and easy-going."Since bringing Erin home Claire has raised more than £2,000 for the units at Liverpool Women's Hospital and Ysbyty Glan Clywd to show her appreciation and give something back.In September she took on the Anglesey Sandman Triathlon and has now set her sights on a half-marathon and a bike ride from north to south Wales.