A GRIEF-stricken Doncaster couple had to take the heartbreaking decision to turn off their baby’s life support system - just six days after she was born.
Rachael and partner Karl Anthony were delighted when she gave birth to what they initially thought was a healthy baby girl at Doncaster Royal Infirmary in November.
Daughter Emily was allowed home to Adlard Road, Wheatley Hills, but within days she was seriously ill and was diagnosed with Non-Ketotic Hyperglycinemia, which causes a build up of a substance called glycine around the brain.
She was placed on life support and doctors said there was no hope of a recovery and asked the couple if they were prepared to allow the machine to be switched off.
Rachael, aged 30, said: “We were devastated. I said ‘we can’t make this decision right now’, and we went for a walk in the park outside the hospital.
“I felt the longer we were out there the longer we could put off the decision.
“I didn’t want to let her go. But the doctors said she was in pain. I thought I was being selfish and should not be letting her suffer. I asked how long she would live after the machine was switched off, and they said two hours.
“We gave her a wash, we put her in some clothes, and took some pictures and handprints. We sat and cuddled her. I looked down and she was snoring in my arms.
“She breathed on her own for 20 hours before she passed away in her daddy’s arms. The colour was still in her cheeks.”
Now mum Rachael Fawcett has pledged to help other parents touched by the same genetic condition as her little girl Emily.
Rachael first became concerned when she was pregnant, when she felt as though her baby was ‘hiccuping’ but scans showed no problems.
Emily was born 10 days late and her reflexes and breathing were tested and found to be all right and she fed but seemed to be keeping her jaw shut.
Mother and daughter were allowed home, but problems with feeding began as Emily was not opening her jaw and not opening her eyes. Experts thought it was tiredness.
Rachael took her back to hospital the next day, becoming concerned about limp limbs. She was found to have no reflexes and was rushed into the neo natal unit, with concerns initially about meningitis. Concerned doctors performed tests which revealed Non-Ketotic Hyperglycinemia.
On day four, she was taken to Sheffield Children’s Hospital, where doctors broke the news that there was no cure and Emily would die.
Rachael and Karl were taken to a waiting room and when they got to see Emily she was in an incubator.
Doctors told them there was no brain activity at all. By day five she was being kept alive only by a life support machine and the couple agreed to allow the machine to be switched off.
After the heartache of losing Emily, Rachael who already had three healthy children, considered having an operation to stop her becoming pregnant again in case another baby had the same condition.
But during an appointment to look at her options it emerged she was expecting again and tests revealed the new baby will be free of the condition.
She said: “Getting the results of the test felt like winning the lottery. I feel like Emily is watching over us now. They say things happen for a reason, and this will make me smile properly again. But I have lost a child and nothing will take away that pain and I cry most days.”