Families Battle Back After Doctors Say Their Disabled Babies “Not Compatible With Life”

International   |   Cora Sherlock   |   Apr 24, 2014   |   9:09AM   |   Belfast, Northern Ireland

Once again, a bereaved family is drawing attention to the failures of the Irish government to provide proper health care and medical attention to families who discover that their unborn babies are suffering from life-limiting conditions.

This diagnosis is devastating enough but for Derry woman Gemma Bradley, the fact that there was so little assistance from medical professionals made a bad situation much worse.  Babies like Gemma’s daughter Lily Rose (who was diagnosed with Trisomy 18, also known as Edwards’ Syndrome) need specialised care and attention from the medical profession.

mylafaithUnfortunately, this kind of care is simply not available in Ireland.  More and more, babies like Lily Rose are labelled with the cruel and de-humanising term “incompatible with life”, and as such, are written off before they have a chance at life.

The underlying problem remains a challenge for the Irish pro-life community.  There is an unwillingness in Ireland to promote the huge benefits of peri-natal hospices where families dealing with these difficult diagnoses can meet others who are in the same situation.  Peri-natal hospices offer other benefits too; an opportunity for parents to plan exactly how they want to give birth to their terminally-ill baby so that they have the opportunity to meet them and spend as much time with them as possible.

Irish families who have received this kind of care say that it was hugely important to them and gave great support at a time when it was most needed.  If this is the case then, we have to wonder why the Government is so slow to promote the care in question.  Offering abortion to families dealing with these diagnoses provides little in the way of support, but merely adds a new kind of trauma.

mylafaith2The signs are hopeful for the future, however.  A number of families who have received this sad prognosis at some time in the past have formed a new support group called One Day More.  They have recently shared their new video and website in the hope of helping others in the same situation.

For many women in One Day More, the group is just a more formalised way of doing what they have been doing for years – offering advice and help to families who discover that their babies are suffering from life-limiting conditions.

Maura O’Riordan gave birth to Laura who had Edwards’ Syndrome and lived for seven months:

“When Laura was born there was no real support for us.  We were encouraged to leave her in the hospital.  But we took her home, she was cared for by us and although things were difficult, there were precious memories there.  We had Laura for seven months, she was born into loving arms and died in loving arms.”

Cliona Johnson, another member of the group, took prized tips from others who had been through the same experience and used that advice to make her family’s time with her son John Paul as special as it could be.

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“He lived for seventeen minutes, both my husband and I got to hold him, tell him we loved him.  We got to do all the things we did with our other children.  That time of “family” was one of the most precious times of experiencing family that I ever remember and I wouldn’t swap it for all the pain of losing him.”

The families of babies who receive this sad prognosis deserve to meet their babies.  They deserve to have the same time and space to make that special connection, to bond with their babies even if it is only for a very short time.  It is up to the Irish Government to provide suitable specialised peri-natal facilities in Ireland. In this way, the Government will be matching the enthusiasm and loving concern of the members of One Day More by who are willing and eager to share their experience with others, simply because they know how very beneficial it is.