Telford mother's moving story of baby Lyla
Jodie Cooper was looking forward to the birth of her first daughter and had no reason to suspect anything would go wrong.
Miss Cooper, 33, of Woodside, Telford, already had two sons and said her pregnancy had given no indication of any problems
She said: "Lyla was delivered by Caesarean section on July 10 last year, she was three weeks premature.
"The scans had indicated she was small, but there had been small girls born on her dad's side of the family, so that gave us no cause for concern.
"But soon after she was born we noticed a piece of her scalp about the size of a 10p piece was missing, and a flap of skin on her hand looked like another finger.
"The medical staff didn't seem too worried and we didn't think anything was seriously wrong.
"They took her away as she wouldn't feed and the next time we saw her she was in a cot with pipes and tubes coming from her body.
"But I knew that it wasn't unusual for a premature baby to be like that."
The next day the situation had changed dramatically.
Lyla had fits in the night and a transfer to Alder Hey Hospital in Liverpool was quickly arranged.
Miss Cooper and Lyla's father, Warren Teece, 31, from Wrexham, were distraught.
This feeling was compounded for Miss Cooper because she was unable travel to Liverpool with her daughter.
She said: "I couldn't leave hospital because of the C-section, so Warren went with her.
"Before he went, we hurried to the registrar in Shrewsbury to get Lyla's birth registered, so her dad would be on the birth certificate and have the necessary legal rights.
"I went down to Alder Hey the next day and was determined I would never be separated from her again."
Initially Lyla's parents thought their daughter would only be at Alder Hey for a week or two before being allowed home.
But then came the devastating diagnosis: their daughter had Trisomy 13 and it was a life-limiting disease.
Miss Cooper said: "Like most people, we had never heard of the disease and the more we read about it the more upset we became."
Trisomy 13, also known as Patau's Syndrome, is a condition caused by a chromosomal abnormality, in which some or all of the cells of the body contain extra genetic material from chromosome 13.
That extra genetic material disrupts the normal course of development, causing multiple and complex organ defects.
As with other conditions such as Down's syndrome, the risk of a child developing Trisomy 13 increases with the mother's age at pregnancy.
The condition affects between one in 10,000 and one in 20,000 births.
Miss Cooper said that Lyla was taken into intensive care for surgery at Alder Hey after kidney failure.
She said: "I thought we would lose her then, but she held on and even the staff were surprised by the fight she put up."
After two weeks at Alder Hey, Lyla was transferred to Claire House, a children's hospice near the Wirral in Bebington.
Miss Cooper said they had a choice to take her back home or let her go to Claire House.
She said: "Lyla was on medicines throughout the day, so we thought it best she was looked after professionally.
"While she was at Claire House we learned how to look after her and prepared to take her home."
Throughout Lyla's time at Alder Hey and Claire House, her parents had to leave their other children in the care of family members.
They felt guilty at having to do this, but understood they had to focus on Lyla.
Miss Cooper said that on August 28 they finally took Lyla home and had nurses on hand there to help them. She said: "We thought things would be okay, but she got an infection and her immune system just couldn't cope.
"Our beautiful daughter passed away on August 29, less than 24 hours after coming home."
To mark what would have been Lyla's first birthday and to raise money for charity, Lyla's parents are organising a charity car run.
Mr Teece plans to drive from John O'Groats to Land's End on July 10, the route covers around 1,000 miles and the target is to complete that distance in a day.
He said: "Some people have already sponsored the car and also donated parts and kit for it, anyone interested in doing that can contact us through our website."
The car being used in the run is a poignant reminder of his daughter's short life.
He said: "It's the car we used for the journeys to Alder Hey and Claire House, and it's also the car Lyla came home in. We want to put up a plaque in memory of our daughter at Ronald McDonald House, which is in the ground's of Alder Hey Hospital, but to do that we have to raise £1,000."
Any money the couple raise that exceeds £1,000 will go to Claire House Children's Hospice and Trisomy 13 charities.
Seven months on from the loss of Lyla, Miss Cooper said things haven't got any easier and she feels lucky to have her boys.
She said: "They meant I had to keep going and I couldn't just give up.
"If it wasn't for them I think I would have gone off the rails.
"It's a case of surviving rather than living; I feel stuck at the moment.
"You constantly question yourself about why it happened. Was it because she was our first girl? Did I do something wrong?
"People say I am a strong person, but they don't see me behind closed doors."
For further information on Lylas story and the charity car run visit www.lyla.org.uk
