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Families whose children deemed ‘incompatible with life’ give powerful witness at UN

'The phrase ‘incompatible with life’ is not a medical diagnosis: it misinforms parents, it pushes families towards abortion, and it denies those families a chance to spend time with their children, to make memories and to heal.'
Tue Apr 7, 2015 - 11:46 am EST

April 7, 2015 (LifeSiteNews.com) -- The advocacy group, Every Life Counts, who have launched a global campaign to end the misleading phrase ‘incompatible with life’, have posted a powerful and moving video of the testimony of families whose children were diagnosed with a life-limiting condition at a recent United Nations event.

The UN conference saw the launch of the Geneva Declaration on Perinatal Care which seeks the support of medical practitioners and researchers in ending the ‘lethal discrimination’ caused by the term, which parents say pushes them toward abortion. The Declaration has already been signed by 320 medics and endorsed by 31 disability and advocacy groups.

In a series of moving testimonies, the parents said:

"Today we are launching the Geneva Declaration on Perinatal Care, which we hope will be supported by medical practitioners and advocacy groups worldwide, so that together we can bring about real change and ensure better care for families who face a life-limiting diagnosis for their unborn baby.

We have undertaken this global campaign because the phrase ‘incompatible with life’ is not a medical diagnosis: it misinforms parents, it pushes families towards abortion, and it denies those families a chance to spend time with their children, to make memories and to heal."

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Tracy Harkin, spokeswoman, Every Life Counts

"For this doctor, my daughter wasn’t a child. She was a thing, ‘incompatible with life’. I had heard heartbeats at each appointment, I had felt movements for weeks, I had seen my tummy growing week by week. How could this doctor tell me that my baby was incompatible with life in the presence of all those signs of life?  ‘Get rid of it as soon as possible and start again with a baby that is worth it’, were his exact words.

We chose to carry our daughter to term, convinced that limited time did not mean limited experience; a lesser body did not mean less value.

My daughter was born on July 18, 2000. As predicted, she died a few hours after her birth. But she did not live just a few hours. She was alive for 9 months in my womb, 13 hours in our arms, and her memory will live forever in our hearts. She was a beloved daughter, a sister, a granddaughter, a niece.

Her name was Anouk. She was worth everything."  

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Monika Jaquier, mother to Anouk, born with anencephaly. www.anencephaly.info

"They told me she had Trisomy 18, and that it was ‘incompatible with life’, and I had to go home and google it. I felt as if those words meant, to them, that her life didn’t matter anymore. They make you feel that your baby is a monster, or that she is not really human, even though she is waving at you from the ultrasound and you can feel her moving and kicking inside you. And they were wrong. She came home with us and lived with her family for 33 days. She was held and cuddled and loved by everyone: she brought nothing but love, nothing but joy. She brought a piece of heaven into our home.

We hear so much about legalising abortion for these babies, but abortion would be a terrible trauma for the baby and for the mother too. We want to be able to love and hold them; to have their short lives cherished the way every baby is cherished. Their disability shouldn’t diminish their right to life."

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Derbhille McGill, Mother to Clodagh who lived 33 days after birth with Trisomy 13

"My baby boy Seán was diagnosed with Trisomy 18, otherwise known as Edwards Syndrome, 21 weeks into my pregnancy. That day was a complete nightmare from start to finish. I asked for some information on this condition, but was told they had no information available to give to me which left us no other option than to go home and google it! Little did I know that once they had that diagnosis on paper that my son’s life would be written off in an instant with no hope or positivity about what the future may bring. I can completely understand how some people would be led in to thinking that a termination would be ‘for the best’, and then look back on that decision with regret afterwards.

The term ‘incompatible with life’ represents everything that is wrong in this field and gives doctors an excuse to refuse to carry out beneficial medical interventions after birth. It was horrendous for me to learn that my baby would not be helped medically in any way after he was born. Basically he would be left to die. When Seán was born he was handed to me, we were put in a room and left alone to fend for ourselves. I had to demand he be examined and when I asked for assistance with feeding him I was told to  ‘try it yourself, and if he doesn’t take any milk it doesn’t matter’. I was so distraught; I felt completely lost and didn’t know what to do. Seán needed help! I wasn’t expecting miracle cures here; I just wanted my son to have his basic human rights met. And I don’t feel he did, all because in their eyes, Seán was ‘incompatible with life’.

I’m proud to say that my little boy defied the odds and went full term, born on August 9th 2014, alive, and breathing on his own. He spent two amazing days in my arms, and knew nothing but love in his little lifetime. He showed us he was compatible with life, although short, it was his life all the same. He is my hero, a true inspiration to all that knew him. I will never regret my decision to carry on with my pregnancy. At the end of the day our children deserve better, we as parents deserve better, things really need to change! Please listen to us, we know what we are talking about and we will stand together to remember our little ones and fight for those who are faced with these situations in the future."

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Sarah Hynes, mother to Seán, who lived for 2 days after birth with Trisomy 18

"Words have the power to bring healing and hope to a person’s life but words also have the power to destroy all hope: that’s what the phrase ‘incompatible with life’ means to me. It is a destroying phrase that brings no hope to a vulnerable, heart-breaking situation.

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My darling Lilly joy lives on in my mind and heart and in everyone else who knew and loved her, so for a doctor to say that to me at the most vulnerable time when I was petrified and scared about my baby girl surviving was so cruel and hurtful. Those words should not be part of a compassionate and loving society. My Lilly Joy died in my arms surrounded by my love and her last minutes here were with her mother and father telling her how much we loved her. These are very, very treasured memories, which we will have for a lifetime, knowing that she knew we had done everything we could to get her here.

She is my daughter she was my daughter and she will always be my daughter. Death cannot change that. We’re just hoping that these horrible words will not be used again as we shouldn’t have to hear them and we should be given all the care and compassion that every parent receives when they have a normal pregnancy not shunned and ridiculed for our decisions to help our sick babies live."

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Grace Sharp, mother to Lilly Joy, born with Trisomy 18

"My daughter Isabella was born in August 2014 and she lived for 54 days. That was her life, not a long life, but her life. I feel that the value of these short lives is being hugely underestimated.  Every single second I had with Isabella was special, every person who got to meet her and love her, now grieve for her with me. I cannot explain the impact she's had. "I'll never forget the first time I got to hold her and take her in. She was so small, and so beautiful and my heart just burst with love for her.

What does this term ‘incompatible with life’ mean for a baby and its family? It means no help, no hope, and no intervention. It means every baby, diagnosed with one of these conditions is written off before they are even born. We need our babies to receive the same care and dignity as any other baby, to be given the same chances to be shown the some basic humanity; this term automatically removes these rights.

That's why I am supporting Every Life Counts. We want to show you our children: the babies who they say are not compatible with this world, we do not want babies like ours to be discriminated against anymore, we want better support for those families for whatever short time they are with us and we want their lives to be as important as the life of any child."

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Sarah Nugent, mother to Isabella who lived for 54 days with a peroxisomal disorder

“Macarena was expecting our second child, we learned about complications with the baby, and we were told the child could be born alive and then die, or be born dead. We were very frightened so you can imagine our happiness when we first heard the cry of our new born son, Nicolás.

So much so that when the doctor told us that our son had Down syndrome, our first response was ‘thank God!’”

The idea that any of our children were at any point ‘incompatible with life’ is ridiculous, all children are made for life, they are the gift of life.”

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Francisco and Macarena Lancha who have two children, Nicolás and Fátima, with Down syndrome

“The life and human dignity of an ill child are even more worthy of protection than those of a healthy child. "It needs to be said categorically that a doctor is not for hire for any work. The doctor is in the service of life ....interrupting human life is not in keeping with the essence of the doctor's profession."

Prof Bogdan Chazan OB/GYN


  down syndrome, incompatible with life, trisomy 18

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