It’s Children’s Hospice Week and in Ireland that means an opportunity to celebrate the wonderful work carried out by the many organisations that provide home care to families of seriously or terminally ill children. All week, we have been hearing about the incredible assistance provided to these families and their children.
It’s also a time to reflect on other ways we can help the families of seriously ill children. For those diagnosed with a serious or life-limiting condition in the womb, there are two organisations in Ireland providing excellent support and care.
One Day More and Every Life Counts are both dedicated to supporting these families, and providing loving care and a listening ear when parents need it most. Set up by families who have experienced the shock and trauma of hearing that their children have a serious condition during one of their prenatal scans, they know the comfort of being able to talk to someone who has been through the experience already.
Many of the families involved are in a position to provide unique advice and assistance to other families, something that medical professionals, for all their care, cannot give. Parents who have already experienced the same feelings of helplessness and shock can provide something really helpful – the benefit of human experience which can often introduce families in shock to new avenues of hope as they hear of different ways to get to know their baby.
“I was surprised by the joy of each new day that I woke up and found him kicking, making his presence know. During this time I learned to live in the moment more than I usually would because I was so grateful that this moment I had him with me and each moment was a bonus.”
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Cliona also puts her finger very clearly on the benefit of getting to know other families in this situation:
“I was fortunate enough to know two other women who had babies that had died shortly after birth a couple of years before. I spent time with each of them and heard their stories and their ideas – what they found helped make their time with their little ones precious. This was invaluable to me and I used ideas from both of them.”
There is no doubt that hearing that your baby has a serious or terminal illness in the womb is one of the most shocking events for any parent. But as a society, we need to find ways to support families that don’t involve abortion, which forces them to consider ending the life of the child that is so dearly loved. Groups like One Day More and Every Life Counts approach these sad situations with compassion that acknowledges the heartache involved but provide a safe space for families to get advice and support without introducing the sadness of abortion.
It is a tragic irony that in Ireland, we are discussing holding a referendum that would remove the right to life of children diagnosed with an illness in the womb. These children and their parents deserve the very best of medical care and attention. Abortion provides neither but very often it is sadly put forward as a viable option in these cases.
As Cliona points out, every baby is unique. Speaking of her own son who lived for 17 minutes, she says:
“He has had a hugely positive influence on myself, my husband and our children. He has even had an impact on our wider family and friends and I am so proud of him for this. He has made his mark on the world.”