"As soon as they did the ultrasound, that's when they offered me an abortion," Dianna told CNA.
While providing information on termination, "that's the first time I felt her move," she recalled. Pro-choice politically but not personally, Dianna decided not to terminate Mary Rose because of the diagnosis. "She was my child; whatever condition she was in, that was going to be good enough for me."
As the pregnancy continued, Dianna consulted with her Eastern Orthodox priest and others to prepare for Mary Rose's birth and the range of outcomes for children with Trisomy 18 – and to prepare for Mary Rose's death. For their family that meant having her birth at home so that they would be able to prepare Mary Rose's body for a funeral themselves, rather than have her be sent to the morgue, as would be required with a hospital death in their home state of Virginia.
Looking back, Dianna says that Mary Rose's life and death were "very peaceful." The complications of Trisomy 18 caused breathing difficulties. "We didn't even know which second it was that she stopped breathing," Dianna said. "There was no suffering; we were the ones who were suffering."
However, her most severe regret, Dianna told CNA, is that she didn't seek out perinatal hospice – which focuses on helping newborns and infants die comfortably and peacefully – rather than pediatric hospice, which provides end-of-life care for children. While she had the support of doctors, Dianna still feels that her experience with pediatric hospice was difficult.
The fact that we offer a plan – something for the babies even though they have a very short life – is reassuring for them and it opens a hope.
Dianna also wishes that families, and mothers in particular, facing difficult prenatal diagnoses could find more support from their communities. People should not be afraid of not knowing what to say or upsetting the mother by mentioning the baby, Vagianos said. "The mother is already upset and the mother is never going to forget that baby."
Despite the difficulties she faced with pediatric hospice and in finding community support, Dianna maintains that she found healing through Mary Rose's death and through the "blessing" it was to come to know her daughter. She is grateful, she says for support she found online and for the healing she's experienced by detailing her experiences in journals, on her blog and through an upcoming book on their family's experience.
"People need support at diagnosis," said Tracy Winsor, Co-Founder of Be Not Afraid, a comprehensive peer ministry to parents facing difficult prenatal diagnoses.
Winsor told CNA that many times when parents face a challenging prenatal diagnosis, they do not know anyone who has been through a similar situation before or have the resources and support they need. When offered support and information on perinatal care and options for their child, parents are more likely to carry their child to term.
She explained that within Be Not Afraid, they provide a variety of services in order to support parents facing poor prenatal diagnosis and seeking to carry their child to term. In addition to perinatal hospice and peer support, Be Not Afraid also helps parents plan the birth process, making sure they have informed consent for any treatment options available as well as a plan for supporting the child for as long as he or she lives. If parents wish to seek extraordinary care or surgery to address congenital defects, Be Not Afraid helps them find out where procedures and kinds of care are available, if those options are not offered in the family's hometown.
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Be Not Afraid has also been able to help arrange other kinds of support as well for families. "We've been able to help get Catholic clergy scrubbed and into (operating rooms). Catholic clergy who were able to lead the surgical team in prayer. Catholic clergy that were in there baptizing if the parents want it."
The range of care provided by Be Not Afraid, she said, is in a way, an extension of pastoral care and the corporal works of mercy. Winsor pointed back to one of their first mothers, where Winsor and others helped to arrange a birth plan and provide support at the hospital for a mother whose baby was stillborn.
When taking a break to get coffee, one of the nurses approached Winsor and told her "'Oh my gosh, I had no idea you were a service I just thought that mother had the best friends.'"
Winsor also commented that a large part of providing support to families is in providing information. "Patients don't always get information on what is basic care," she said, adding that many families do not receive the full range of information on options for caring for their child and their condition.
As a result of the information and support that they provide, Winsor said she's seen changes in the medical community where Be Not Afraid works.
"I think the medical providers are happy to know that our families have been well-supported and well-prepared," she commented, adding that most of their referrals now come from within the medical community. Winsor added that she's also seen personal changes in medical providers who may not have initially supported a family's decision to carry their child to term.