Throughout March in the US, parents of children born with severely life-limiting conditions shared their stories as part of Trisomy Awareness Month.
Many of the parents were told that their unborn child was ‘incompatible with life’ after learning that they had conditions such as Trisomy 18, also known as Edwards’ syndrome.
But they all spoke with passion of their determination to resist pressure from doctors and bring their child into the world.
Edwards’ syndrome
The parents of Kristina Krotzer were told that she would be very likely to die within moments of being born.
She had been diagnosed with Edwards’ syndrome, a chromosomal condition which causes internal organ defects.
But in March 2000, Kristina was born and after five days in hospital she was allowed to go home.
Incompatible with life
Amazingly Kristina is still alive 15 years later, she is going to school and her mum Terre says her daughter has taught her to “value every single day that we get”.
Naomi Coy was likewise told that her baby girl was ‘incompatible with life’ and repeatedly advised to have an abortion, after her baby was diagnosed with Edwards’ syndrome.
But she told the doctor: “Just because she has an extra chromosome and a few abnormalities, doesn’t mean she is not our sweet, precious baby. We are pro-life and you are not going to change our minds.”
Wonderful and terrible
Baby Eliana was born in December last year and after undergoing heart surgery, Naomi says: “She is doing very well”.
In Canada, MP Kyle Seeback shared the story of his son Elijah, again diagnosed with Trisomy 18, and tragically stillborn.
However, Mr Seeback said that “the time we had together was incredibly moving, powerful, wonderful, and terrible, I don’t know how else to describe it”.
Defiance
Babies born with other serious life-limiting conditions are also living, in defiance of medical expectations.
Angela Morales, now one year old, was born with anencephaly – a condition in which the skull and brain fail to develop – which often results in death before or shortly after birth.
Her mum Sonia was told she was ‘incompatible with life’ but she told American news network NBC 10 News: “No, anencephaly is not incompatible for life, because she is living and she’s proving that these babies can live.”
Not a medical diagnosis
A pro-life organisation recently addressed the United Nations, calling for the medical establishment to discontinue the use of the term ‘incompatible with life’.
Every Life Counts travelled to Switzerland to mark the launch of the Geneva Declaration on Perinatal Care.
The declaration states: ‶As medical practitioners and researchers, we declare that the term ‘incompatible with life’ is not a medical diagnosis and should not be used when describing unborn children who may have a life-limiting condition.”