A mum has defied doctors by giving birth to a disabled daughter they tried to write off before she was born – after insisting her baby had every right to life and treatment.
Determined Elle Brant, 21, and partner Denzil Amoah were told their unborn first child had life-limiting Edwards’ Syndrome when Elle had her 20-week scan.
The condition, also known as Trisomy 18, is caused by an extra chromosome which disrupts growth and in most cases causes miscarriages or stillbirths.
Of the babies that survive to birth, around half will die within two weeks and only one in 12 makes it to a year.
Elle claims doctors at London’s St Thomas’ Hospital encouraged her to have an abortion.
When she refused they told her they didn’t want to provide treatment – including resuscitation – if her daughter did survive to birth, she says.
Instead of emergency care to keep her alive, medics told Elle and Denzil they would put their little girl in a cot and let them say their goodbyes.
But the couple refused to accept their decision and insisted that their baby deserved the same treatment as any other.
After a 19-week battle involving meetings and heated emails they finally convinced the reluctant consultants to change their minds.
Their precious daughter Amelia was born by C-section on May 10, weighing 4lbs 8oz, but shortly afterwards stopped breathing and turned blue.
She was rushed to intensive care where doctors resuscitated her and she miraculously pulled through.
Two months on, little Amelia has defied the odds to be back at home in Hackney, East London with her doting parents – and is thriving.
Elle, an administrator, said she accepts Amelia may not live to adulthood but believes that babies with genetic conditions deserve the same chance as any other child.
She said: “There was a massive chance we would lose her because her heart could stop at anytime.
“They were pushing for me to terminate and when I decided against it, they said they weren’t going to offer her oxygen or treatment.
“They weren’t offering me monitoring during the pregnancy to check the baby‘s heartbeat because she had Edwards’ Syndrome.
“The were discriminating against her before they even gave her a chance.”
Elle said she fought neonatal consultants at the hospital for almost five months, attending weekly meetings and exchanging dozens of emails with hospital staff.
With the help of another couple who went through the same thing, she and Denzil eventually encouraged them to treat Amelia after the birth.
Elle said: “They were being very arrogant with us. They were saying, ‘She won’t survive, we won’t treat her’.
“But to see her on the growth scans and feel her kick and hiccup was so overwhelming.
“Maybe I was a little bit naive, thinking that they had got it all wrong, but I wanted her to be treated like any baby.
“I didn’t want her to be discriminated against because she had Edwards’ Syndrome.”
Amelia was born four days overdue and rushed straight to intensive care where she later turned blue and was resuscitated by doctors.
After spending 16 days in intensive care the mite, who is thought to be deaf, was allowed to go home to Hackney, East London.
Elle added: “She would have died if we hadn’t fought for her. They said they would put her in a cot and leave us to have some time with her.
“But now she is doing amazingly. She has got determination all over her face.
“Doctors told us she would never come off oxygen but she has. She is just on a feeding tube because she is so tiny.
“She breathes a lot harder than we do so she can’t take bottle and breathe at the same time.
“She does keep me up most of the night but she is a little joy. She is my daughter and I love her so much. She is so beautiful.”
She added: “At the moment we aren’t too sure what will happen in the future. She will only live to her thirties if she is lucky.
“But at the end of the day she is a human being, and she is our child.
“For someone to turn around and say that that they don’t want to help your child because of their condition isn’t fair.”
Denzil, 32, a scaffolder, said: “Before we even had the baby they tried to persuade us not to go through with the birth at all.
“It just seems to us that they wrote her off before she was even here without giving it a second thought.”
He added: “It is such a shame that women are convinced to give up their children before they are even born.
“Every baby is an individual and even though it has a genetic problem, it isn’t the end of the world – our little baby is here and she is just fine.
“Imagine if we hadn’t gone through with it. We would be so gutted if we did get rid of her and we had a crystal ball to see her now.
“A life is a life. If she had been born without us knowing the circumstances beforehand they would have pulled out all the stops without questions.”
Guy’s and St Thomas’ NHS Foundation Trust refused to comment on Elle’s case.
A spokesman said: “The health and well-being of patients is our priority and we always seek to discuss all options relating to medical treatment with them or, in the case of children and babies, their families.
“Edwards’ Syndrome is a rare condition and care is provided on a case-by-case basis, with a focus on what is considered to be in the best interests of the patient. We are unable to provide details of individual treatments.”
Katie Elmer, who lost her own daughter to the syndrome and runs the Emily’s Star charity, said: “So many amazing children are born with Trisomy 18 and are thriving.
“Medical professionals need to stop reading from text books and start looking at and treating the child in front of them.
“Our children deserve a chance if that’s what their parents want, no one should feel pressured into a decision.”
