A foundation in Ireland is helping to provide life-affirming options to parents of children born with severe disabilities.
The mission of The Jack and Jill Children’s Foundation is to provide direct funding to families of children with brain damage up to the age of 4 who suffer severe intellectual and physical developmental delay, enabling them to purchase home respite care. They also provide end of life care to all children up to the age of 4 years.
The foundation’s website says, “These are children who as a result of their condition require intensive home nursing care. The Foundation gives these families the gift of time, time to do the things that we so often take for granted like shopping, taking their other children to the park, a night’s sleep, etc.”
The ministry was a huge help to Tom and Mandy Dunne. When Mandy was 20-weeks pregnant with her daughter Muireann, she learned through an antenatal scan that Muireann had Patau’s syndrome, a condition “incompatible with life.” Patau’s syndrome is a chromosomal abnormality that prevented Muireann’s brain from developing properly. Tom and Mandy were informed that if Muireann survived the rest of the pregnancy, she probably wouldn’t survive the birth.
“Our lives fell apart,” Tom and Mandy told the Irish Times. “When at 20 weeks you are told about this, you have 20 weeks to get in your mind what you want.”
Abortion was never an option to Tom and Mandy. “It would never have been an option for me. We were going to be grateful for whatever time we had with her. When her time was up, it was to be on her terms and not ours.”
When Muireann was born her parents were told that she probably only had minutes to live, but then she surprised everyone by starting to cry. Her skin went from grey to pink. Eventually bringing the child home was becoming a possibility, but that caused Tom and Mandy to panic. They never thought this could happen, so they hadn’t prepared their house for that.
Then they got a very helpful visit from Joanna Doyle from The Jack and Jill Foundation. “When you are coming home with a really sick child and you feel like you are on your own, you don’t know how things are going to work out,” said Mandy. “After talking to Joanne, it really made us more comfortable about going home.”
The Jack and Jill Foundation helped Tom and Mandy to have the right attitude about what they were doing. “We looked on it as if we were bringing her home to live, not die,” said Mandy.
After six-weeks of love and caring, Muireann passed away at her home. The nurses that the Jack and Jill Foundation provided helped Tom and Mandy through that process, as well as with aftercare support.
Tom and Mandy’s story reminds me of one of my favorite YouTube videos, “Choosing Thomas.” Parents T.K. and Deidrea Lauxs allowed The Dallas Morning News to film their journey with their son Thomas who was born with Trisomy 13 and died five days later at home.
At the end of this moving video, Deidrea explains why they did not abort Thomas. “We didn’t not terminate because we were hanging onto some sort of hope that there was a medical mistake or that there was going to be some sort of medical miracle. We didn’t terminate because he’s our son.”
To learn more about perinatal hospice and palliative care in America, visit PerinatalHospice.org. It is really important to know what options are available because you may know somebody who would benefit from that information one day if they get tragic news about their unborn baby.