City hospital helps give miracle girl her best Christmas
Doctors feared Laila wouldn’t survive the night after a routine hospital hearing test
DOCTORS told Laila Rice’s parents she would not survive the night.
But the “fiesty” little miracle girl has just celebrated her best Christmas yet, despite being the only child in the UK with her specific illness.
After the terrible loss of their second daughter at birth, parents Ashley and Brian were “overjoyed” by Laila’s arrival.
But their delight very quickly turned to fears that they would lose another daughter as, within 48 hours of birth, she was gravely ill.
Ashley said: “We have a healthy child, Elise, but lost our daughter Aliya at full term. Because of that, we had regular scans and nothing was picked up.
“I had a very, very quick labour of one hour and 20 minutes from start to finish but she seemed to be fine.
“We were totally overjoyed; she was home after six hours and her big sister Elise was delighted.”
At two days old Ashley and husband Brian took Laila for her routine hearing test.
Doctors noticed her oxygen levels were low and that she had a heart murmur. But Ashley and Brain were unconcerned as Elise had been diagnosed with a heart murmur at 10 months and she was healthy.
But things quickly took an alarming turn as a paediatric consultant checked the newborn over.
The 33-year-old said: “They didn’t tell us anything but I could see by the number of doctors and nurses who were starting to appear that something was badly wrong.
“We were thinking, ‘Are we going to lose another child at the end of this?’”
Doctors sent the West Lothian family to Yorkhill Hospital.
Further scans showed Laila had three highly complex heart problems: pulmonary atresia; transposition of the great arteries; and complete AVSD.
She also had Heterotaxy Syndrome, meaning the baby
‘‘ I could see the concern and panic in their faces
had two right lungs and kidneys, a mid-line liver, no spleen and a twisted bowel.
It was a total genetic makeup that had never been seen before in the UK and gave the baby a 25 per cent survival rate.
Ashley said: “We were so gutted for Elise as well because being a big sister was all she had wanted and it looked like this was going to be taken away from her.”
At six days old Laila had her first open heart surgery.
Ashley said: “The surgeon had the biggest hands I had ever seen in my life, hands like shovels, and my daughter had a heart the size of a strawberry.”
The surgery went well – but then her feeding tube began bringing up bile, indicating a bowel problem.
Ashley said: “I had to sign a blank form to say, ‘We are going to open your child up but we don’t know what we are going to be doing once we’re in there’.
“If her bowel was dying then we would have to let Laila die.
“It turned out her bowel was twisted on itself but they managed to save all of it.
“I still always had the thought, ‘Are we going to lose her? Am I strong enough for this?’ I felt so weak after losing one child.”
Her heart surgery had to be done in three stages with Laila not strong enough for the second surgery until she was 14 months old, in April 2013.
The operation took 16 hours with Laila taken to intensive care and then the high dependency unit where her oxygen levels began to fall.
As she was too ill to be moved, the surgical team had to close the ward and do the operation there.
Ashley said: “You carry a degree of guilt. You felt rotten when people were turning up to the ward and being turned away from seeing their own children.
“Her oxygen levels continued to fall and the surgeons didn’t know what to do.
“I had looked to them for strength but I could see the concern and panic in their faces.
“They had carried out what is known as a Glenn procedure so they stripped it all back down and then had to redo the surgery.”
Close to midnight, surgeons told Brian and Ashley they had been unable to take Layla off her ECMO machine – an artificial lung.
In the next 24 hours they had to clean out Laila’s chest three times to remove clotting, closing the ward a further three times.
Ashley said: “We were told to prepare ourselves.
“I was asking my mum if she thought we could have Aliya’s headstone redone to include Laila’s.”
A couple of days later the doctors were able to take Laila off the ECMO machine but she had started to develop E coli in her chest.
Ashley said: “We were taken into a room for the second time and told ‘She’s definitely going to pass and probably tonight so you should get the family in.’”
Brian and Ashley were exhausted and nurses told them to go home.
They slept through the night for the first time in months and woke with a start to find it was 6.30am.
Rushing back to the hospital, Ashley and Brian entered the ward and could see machines in Laila’s room had healthier readings.
Ashley said: “The readings were so good that we thought they had moved Laila into a side room and this was a different child in her bed.
“We thought, ‘This must be it.’ I was in utter despair.
“Then we noticed the nurses were smiling. That child in the bed was Laila. It was like a miracle had happened overnight.”
After four weeks on life support with no hope for her recovery, Laila had pulled through.
She required intense support and, having been so heavily sedated for so long, she had become addicted to ketamine and had to go through withdrawal, which Ashley described as “horrific”.
Showing the sense of humour that helped keep she and her family going through the ordeal, Ashley added: “Laila went in with a few teeth and came out with a full set – so at least teething was something we missed out on.”
Brian, 35, and Ashley had moved to Glasgow while Laila was in hospital and Ashley’s mum moved in with Elise, now 13, so she didn’t miss school.
The family – including Brian’s son Dylan, 17 – was determined to get life back to normal.
Laila suffered terrible anxiety about her hospital treatments and so received support from the Teddy Hospital and Play Therapy services provided by Glasgow Children’s Hospital Charity.
While Ashley tells Laila’s story, the now-six-year-old becomes upset at the mention of blood tests.
Ashley said: “You can see how anxious she is but then you can’t sugar coat things.
“Terry from Glasgow Children’s Hospital Charity was amazing.
“Imagine at six years old you have all these people who want to see you and touch you and poke and prod you.
“But the support we have had from the charity has really, really helped Laila massively”
Primary three pupil Laila should have had her final heart surgery before starting school but is only now strong enough for the operation, which is planned for January.
Ashley said: “I feel terrible about the open heart surgery in January. We know what can go wrong and it’s hard not to go back to that place but she needs this operation to survive.”
But there is no alternative to surgery for Laila and so the family has been making the very most of Christmas, putting the tree up on November 28 and celebrating since then.
Ashley added: “We don’t think too far ahead, you can’t. We just hope that a few years down the line there will be advances in medicine that will help her.
“Laila is the feistiest, brightest wee girl and I don’t regret any of this because we wouldn’t have the amazing wee girl we have without it. You would go to the ends of the earth for your kids and with Laila, she’s so special she could get you through anything.” Instead of sending Christmas cards this year, Ashley is fundraising for Glasgow Children’s Hospital Charity. To donate see: www.facebook.com/ donate/1926150211014379/