'I was told, You probably won't need counselling until after the baby's dead' - grieving mum welcomes new HSE guidelines
A mum-of-two who lost a baby to fatal foetal abnormalities has commended the new guidelines for HSE staff advising on treatment of bereaved parents.
Claire Cullen-Delsol (32), from Waterford, joined RTE Radio One’s Morning Ireland as a spokesperson for the group Termination for Medical Reasons, founded by Amanda Mellett.
She explained that she had a seven-year-old daughter and a one-year-old son when she became pregnant with her third child.
Last August, she attended her 20-week scan, at which her unborn baby was diagnosed with fatal foetal abnormalities.
“The midwife was doing her measurements as usual and she was taking a bit longer than usual. I asked was everything okay and she said no,” Ms Cullen-Delsol said.
“There were several problems that she could physically see on the scan such as a cleft lip, problems with the heart and an underdeveloped brain. She couldn’t see a stomach and the kidneys didn’t seem to be functioning.”
She was referred to a foetal medicine specialist at Holles Street, where she was told her baby had trisomy 13 or Patau syndrome, a genetic disorder in which a chromosome appears three times instead of twice.
“I was told that because of the severity of her symptoms she was not going to survive to be born alive,” Ms Cullen-Delsol said.
Although she wanted to travel to the UK to obtain an abortion, she said she couldn’t afford to travel.
“I was in a fairly low-paid job and I couldn’t afford it but most importantly I couldn’t leave my other two children.
“It just wasn’t a possibility for me to travel to the UK so I continued my pregnancy against my will. It was the only option that was available to me.”
Despite her repeated requests for counselling, Ms Cullen-Delsol said it was unavailable to her, and she had to source a counsellor through a local community centre.
“I asked for counselling and at one point I was told, ‘you probably won’t need counselling until after the baby’s dead,’” she said.
She continued to attend monthly scans and was invited to speak to a midwife about what to expect during a stillbirth, as they didn’t think the baby would survive past 30 weeks.
“They described the physical birth, what it would be like to give birth to a baby who was already dead - how I would know she was dead, how I would perceive the lack of movement, how I would feel it myself, how I would present myself for a scan and then they would put tablets into my cervix and then I would start contractions and give birth.”
Her baby, named Alex, died on September 25 after her heart stopped at 26 weeks.
Health Minister Simon Harris and HSE director General Tony O’Brien are set to launch the updated guidelines for health workers, titled ‘Standards for Bereavement Care Following Pregnancy Loss and Perinatal Death’, later today.
The new guidelines will specifically acknowledge fatal foetal abnormalities, and offer instructions on how best to assist parents in the aftermath of such tragedies, regardless of whether the mother carried the child to full-term or travelled abroad for an abortion.
Ms Cullen-Delsol said she “absolutely welcomes” the new guidelines, and had met with Mr Harris to discuss her own case.
“I think it’s about time that all bereaved parents are included in our guidelines,” she said, adding that she supports the inclusion of after-care for women who travelled for a termination.
“It’s still a bereavement, it’s not a choice that somebody made to end an unwanted pregnancy, it’s still losing your much-loved and much-wanted baby.
“If you look at my situation, for example, had I chosen to go for a termination, I would have had a stillbirth three or four weeks earlier (…) Why would I be less deserving of care and comfort and support if I had had that experience a few weeks earlier?”
It is estimated that approximately 14,500 parents are bereaved in the maternity services each year.