My Baby Only Lived for 17 Minutes But I'll Remember Him Forever

Parents who are members of the group One Day More are meeting with politicians in Dáíl Éireann in Dublin, letting them know they don’t regret not having an abortion even though their children lived only a short time after birth or may not have been born at all. They are telling elected officials that they want to see the establishment of peri-natal hospice care facilities for unborn babies with terminal illness and their families.

Cliona Johnson, a spokesperson for One Day More who told her story on Ireland’s top current affairs programme Primetime said: “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.”
 
“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 added. Johnson’s son John-Paul lived for 17 minutes with anencephaly and doctors offered her a chance to have an abortion outside the country before his birth. She said no.
 
Johnson said 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,” the courageous mother added.
 
She said that “because of the almost exclusive focus on abortion for babies with terminal illness there are countless couples out there who were not given the opportunity to know about the existence of peri-natal hospice care and the incredibly positive experience that it can provide. 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.”
 
“While 17 minutes might seem like a very short time, it is etched into our hearts forever. It has been such a gift to look back during our time of suffering and loss and remember those precious peaceful moments,” Johnson said. “To know that we held onto and loved John Paul for as long as we could and then let him go when the time was right, has been such a comfort in the pain of losing him. This is what all parents really want to do for all their children – to be there for them when they need it and to let them move on to greater things when the time is right. I realised reflecting on John Paul’s life that this was no different. It all just happened in a much shorter amount of time.”

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