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