Although he lived outside the womb for just four hours, baby Shane Haley gained almost one million followers on Facebook and garnered the attention of the world’s media due the innovative “bucket list” of fun activities or significant locations his parents took him to while he was still in the womb. Baby Shane had been prenatally diagnosed with anencephaly, a diagnosis his parents described as “devastating”.
Shane’s parents, Dan Haley and Jenna Gassew, came to Dublin to speak to the International Perinatal and Hospice Care Conference organized by Every Life Counts and others at the Royal College of Surgeons. At the conference they made a powerful and profoundly moving presentation about their son Shane and the important of perinatal care at a medical conference and they also made several media appearances which allowed them to share their son’s beautiful story with the rest of Ireland.
On Ireland AM they spoke movingly about Shane and the importance and value of even a short life. “We wanted to make the most of his life,” they said. “He was our son, and we were his parents and we wanted to take care of him as long as we could”.
“He was our little boy and even though he was given such a short life expectancy because of anencephaly, we wanted to make sure that we gave him a lifetime worth of adventures and love while he was with us,” they said. Dan and Jenna was given the option to abort but decided firmly against termination.
Interviewed by Newstalk’s Colette Fitzpatrick they said that they both knew that they would always keep the baby, “we were just parents and when you become parents you do everything you can for your child.”
“We said, he is still our son and the diagnosis didn’t change that he is our son,” said Dan Haley in a moving and poignant interview.
The Haleys said that completing the Bucket List for baby Shane was a comforting process and that they would remember the time they had together for the rest of their lives. They shared how his birth was a celebration: “We told him how much we loved him.. I just kept saying ‘you’re so handsome, I love you so much’,” his mother Jenna said.
The Haley family’s bucket list included going to a Phillies baseball game, the Zoo, Carnival rides, visiting the Statue of Liberty. They posted their bucket list photos to Facebook where their story quickly went viral and Baby Shane soon had a huge and supportive following from all across the globe.
On Ireland AM, presenter Mark Cagney said that the love Dan and Jenna showed for their son was ‘extraordinary and uplifting’ and expressed his admiration for their courage, dignity and grace.
The TV presenter also asked if a view might exist amongst some medical professionals who thought parents were best to opt for abortion where a baby was diagnosed with a condition like anencephaly.
Jenna pointed to the parents who she had met in support groups online who had felt that there was no other option than abortion – because perinatal care had not been offered to them – and who now experienced feelings of loss and pain. They urged doctors to do more to support parents so that they might have time with their sick babies.
Please take a moment to watch Dan and Jenna and hear their remarkable story of love on Ireland AM or listen to them on Newstalk.
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