By Sarah Mac Donald - 14 November, 2013
A group of parents of children whose disabilities or medical conditions were diagnosed pre-natally and proved fatal in some cases have criticised the lack of political support for peri-natal hospice care.
One Day More supports and represents parents who have received a poor pre-natal diagnosis for their babies. It promotes hospice care and support for families in these situations.
Members of the group met politicians in Dáíl Éireann on Wednesday to discuss the establishment of peri-natal hospice care facilities for unborn babies with terminal illness and their families in Ireland.
“To date there has been almost extensive focus on abortion and little or no attention given to the development of peri-natal hospice care as a way of dealing with this issue. One Day More strongly urge the government to change this focus,” spokeswoman, Cliona Johnson, said.
“Peri-natal hospice care is there for parents to support them as soon as they receive a diagnosis. In real terms it gives families an opportunity to prepare to meet their baby and make memories with them, however brief that may be,” she explained.
Relating her own personal experience, Cliona Johnson recalled that “despite the initial heartbreak when we received the news that our baby had a terminal illness, I look back now with joy and peace at the memories we made with our son John Paul.”
“Peri-natal hospice style care made our journey with our son one of many wonderful moments that we still cherish to this day. We were able to meet him, hold him, love him and walk every step of the way with him until the inevitable moment when we had to bid him farewell. We are thankful to all the staff, family and friends who helped make the time we spent with our son so special.”
She said that “because of the almost exclusive focus on abortion” countless couples were not made aware of the existence of peri-natal hospice care and the incredibly positive experience it can provide for babies with terminal illness.
“One Day More is committed to promoting adequate peri-natal hospice care facilities in Ireland. The time has arrived to give this approach the prominence it deserves as part of the ongoing public discussion on this issue,” Cliona Johnson said.
Members of One Day More believe each child, no matter how short his or her life, has something unique and precious to bring to this world and to their family. “We also believe that to love our children for as long as we have them is what every child, healthy or unhealthy, deserves,” the group has stated.
The group also highlights that their babies’ lives “had worth and value. We feel that the phrase ‘incompatible with life’ suggests that our child was somehow less than human, when the truth is that our baby was fatally disabled and would not survive long.”
“Our babies were loved to the end and we believe that as a matter of justice every baby deserves to live his or her life to its natural end…no matter what the ‘anomaly’.”
For more information: www.onedaymore.ie