90% of women whose fetuses are diagnosed with Down syndrome choose to have an abortion, which is legal until the time of birth.
But activists say expectant parents are given outdated advice and encouraged to end the pregnancy.
BBC spoke with three mothers who want the system to change.
“They only supported me if I chose the abortion option”
Jaxon Buckmaster is, in many ways, a typical six year old boy.
He loves swimming, cars, dinosaurs, Mickey Mouse, and performing with his musical theater group.
He is the youngest of five siblings and is described as “a little comedian” with a “really cheeky” sense of humor.
Jaxon also has Down syndrome, which means that has an extra chromosome and a learning disability.
“It takes him longer to get to the next stage, but we celebrate it much more because it is a great achievement for him,” says his mother, Lorraine.
Jaxon is an excellent student at her mainstream school, where has many friends and has no other illnesses.
This is why Lorraine cannot understand why midwives were so negative about this condition when she was pregnant.
She found out that Jaxon might have Down syndrome after having additional tests and blood tests recommended because of her age.
“I was 45 at the time and I knew there would be a higher probability, but I didn’t care, ”he says.
“The midwife said it would take longer to see Jaxon on screen, so we listened.”
The sonographer explained that if the baby showed markers of the condition, the next step would be an amniocentesis, a test that involves a small chance of miscarriage.
“I said no, we weren’t interested, partly because we had lost a baby the year before. His response was quite aggressive and he said ‘Women like youor they make me sick. Why take an exam if you are not going to do something about it? ‘”
Later, the midwife phoned, saying that she was “very sorry” but that she had “Very bad news“Confirming that the baby had a 20% risk of having Down syndrome.
Lorraine and her husband Mark rejected all further evidence.
They wanted to have to your baby, no matter what.
“They only supported me if I chose the abortion option, which is what they assumed, but when I said I wanted to stay with Jaxon they lost interest,” adds Lorraine.
Jaxon was diagnosed at birth and Lorraine says the family has never regretted it.
He says his brothers adore him and fight over who will take care of him when they are older.
“I want him to get married, work and have a normal future,” he says.
“We know that will always need supportBut we really believe that he will lead a full life. Is a showman, a true entertainer and we think he will end up on stage. “
“At 38 weeks, they told me there was still time to have an abortion”
Throughout her pregnancy, Emma Mellor felt pressured why abort his daughter Jaimie.
At 24 at the time, she already had a young son with her husband Steve.
“In all honesty, although we made it very clear that abortion was not an option for usIt was offered to us 15 times. They really pressured us and seemed to want us to have an abortion, ”she says.
At her 20-week exam, Emma was told that her daughter had some fluid in her brain.
Doctors said he likely had a disability.
“From that moment on, they recommended that we abort and they told us to think about the effect on our son and his quality of life ”.
At the time, her son Logan was on the waiting list for surgery after being born with a hole in his heart.
Emma explains that they couldn’t imagine end your daughter’s life with an injection in the heart to prevent it from beating, the abortion method recommended after 22 weeks of pregnancy, while waiting for a surgeon to fix their child’s.
“It inspired us to make the right decision. We decided to move on and hope for the best ”.
At 32 weeks, a test showed she had Down syndrome, and doctors reminded Emma multiple times that they could legally abort until birth.
“At 38 weeks, the doctors made it very, very, very clear that if she changed her mind on the morning of delivery she would let them know, because it was not too late,” she says.
“They told me that Until my baby started to descend through the birth canal, she could still abort ”.
When Jaimie was born, Emma was told she had Down syndrome, but that otherwise she was healthy.
Five years later, Jaimie is her brother’s “best friend” and attends a normal school, where he is ahead of some of his peers in reading.
“He loves to dance and do gymnastics. Has some difficulties, but he is like any other child his age. It lights up the room and people just walk up to it. “
“When we received the diagnosis, it was worried about her future. Certainly, as she gets older she will run into some challenges, but she continually proves that she shouldn’t be underestimated. “
“Jaimie can do anything she sets her mind to.”
“I began to wonder what is wrong with having Down syndrome”
16 years ago, Nicola Enoch was sure she didn’t want a baby with Down syndrome.
Pregnant at 39, she discovered that this was more likely to happen after a screening test and made an appointment for an amniocentesis.
However, he canceled at the last minute.
After having suffered four miscarriages, He was worried that the test would lose the baby.
- Between 700 and 1,000 babies born, one will have Down syndrome, which means they have an extra chromosome and a learning disability.
- About half have heart defects, but only 10-15% require medical intervention
- 80% of children with the condition are born to women under 35 years of age.
- In the 1960s, life expectancy was 15 years. Now it’s between 50 and 60
Source: NHS / Positive About Down Syndrome
When Tom was born, Nicola was elated. But the next day, a pediatrician asked her if she thought she looked normal.
Tom was diagnosed with Down syndrome and Nicola’s world fell apart.
“They absolutely did not offer me no support to take care of it, ”he says.
“I felt complete and utter despair. I was devastated“.
She would never be able to get on a slide, doctors said, as a community midwife broke down in tears.
Nicola grew increasingly distant from her baby and considered putting him up for adoption.
“I was very sad for the baby I had expected and terrified of the future, and actually I was wondering if it would be better for all of us if Tom didn’t survive, “he says.
The Nicola’s maternal bond had been “broken” and it took her more than a year to fall in love with her son again.
“I started wondering, ‘What’s wrong with Down syndrome?’”
Tom, now 16, is a general education student.
Nicola describes him as “charming, witty and charismatic.”
He is a fan of the West Bromwich Albion football team, he also enjoys golf, snorkeling and kayaking, and hopes to get a job and get married.
Nicola says that canceling the amniocentesis was the best decision she made.
I’m terrified of the idea that could have ended tom’s life. They made me believe that it would have a negative impact on our lives, but it has enriched them and we are undoubtedly better people for having it ”.
Nicola runs a charity called The Ups and Downs, which supports more than 70 families, and has created a website called Positive About Down Syndrome.
It has also published several books, distributed publications in maternity units throughout England, given training sessions for the Public Health System and has managed to have the advice on its website modified.
Nicola says she is worried that parents will drink life and death decisions based on outdated information.
He also believes that the existence of Down syndrome is threatened by a new blood test called non-invasive prenatal test.
It will be offered to women whose initial tests show a higher chance of having a baby with Down syndrome.
An “important” step
The health system said it wanted to allow parents to do “Personal informed choices” and that the optional assessment “should be offered in a sensitive, non-directive manner.”
Clare Murphy, deputy executive director of the British Pregnancy Counseling Service, said the test had simply given women a more accurate and less invasive screening option.
“This is a hugely important step forward in women’s health care,” she said.
“To restrict it would be to restrict women’s access to the most effective and low-risk way to obtain information about their own pregnancies, and that would not be ethical at all.”
What advice is given to parents?
The UK Health System website says that deciding whether to continue a pregnancy with a baby with Down syndrome can be a very difficult decision.
Advise women to talk to doctors, family, friends and various charities and with people who have been in the same situation.
It says that women should take their time and that regardless of what they decide, they will have support.
Now you can receive notifications from BBC News Mundo. Download our app and activate them so you don’t miss our best content.