“We did not want an abortion, we wanted to give this baby a chance to fight”: Parents tell doctors that babies with a disability can have “wonderful” lives.

25 November 2019

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Parents who refused abortion after being told their unborn child had Edward’s syndrome say that “medical professionals need to be aware that children with trisomy 18 can live a wonderful life” after their daughter defied the odds and survived to reach her first birthday.

Parents Dillon and Hayley Johnson said: "We told our doctor that we did not want to have an abortion. No matter what, we wanted to give this baby a chance to fight."

SPUC Director of Campaigns, Antonia Tully said: “In refusing an abortion, Dillon and Hayley showed the natural instincts of parents who want to protect their baby; heightened in their case because their baby has a disability. Dillon and Hayley gave their daughter a chance and recognised that she deserved to live whatever her disability. They chose life and now their daughter is doing well.”

 “I want to show that trisomy 18 is compatible with life.”

Hayley and Dillon, from Texas, discovered at a 27- week scan that their unborn daughter, Harper, had Edward’s syndrome, a rare genetic condition also known as trisomy 18. Edward’s syndrome disrupts natural development.

Medical staff told Haley and Dillon that most children with this condition will die before birth or shortly after and presented them with abortion as an option.

Haley and Dillon refused abortion, and their daughter, Harper, was born shortly after.

Weighing just over 4lbs and undergoing multiple surgeries, Harper defied all the odds and has recently celebrated her first birthday.  Haley hopes her daughter’s incredible journey can give hope to other parents that trisomy 18 is compatible with life.

Hayley said: “The doctor said that babies with trisomy 18 typically do not make it to birth. I started crying. She told me not to Google it because of all of the horror stories. The doctor was right, we read all the dreadful stories about babies dying in the womb or shortly after birth.

 “My husband and I remained optimistic, but we always knew in the back of our minds that anything could happen. During Harper's first year of life, we spent about a quarter of it in the hospital."

“I want to show that trisomy 18 is compatible with life. Medical professionals need to be aware that children with trisomy 18 can live a wonderful life.”

Eradicating disabled babies

Prenatal testing in the UK is commonly used to detect babies with chromosomal abnormalities such as Edward’s syndrome, who can then be eradicated by abortion. A prenatal combination test, comprising an ultrasound scan, a blood test and the mother’s age, is carried out to determine if a child is likely to have a chromosomal abnormality such as Edward’s syndrome.

Currently, in the UK, the vast majority of babies diagnosed with chromosomal conditions are aborted. The 1967 Abortion Act permits abortion until birth, if the unborn baby is suspected to have a foetal anomaly such as Edward’s syndrome. In the UK during 2018, 1,142 unborn children were aborted following a diagnosis of a chromosomal abnormality.

Antonia Tully said: “It is heartbreaking to think of the countless parents who have aborted their baby due to the pressure of abortion. And it is devastating for disabled people that, lethal discrimination prevails to such an extent in health policies.”