I have three living children. Each of my pregnancies was met with a whirlwind of emotion, planning, and fear.
“Am I eating right?”
“Is my baby growing on schedule?”
“Will he be healthy?”
These are all common concerns among new parents. But what happens when things don’t progress according to plan? What happens when planning for your baby’s birth includes the grave sadness of planning for her death?
The miracles of modern medicine include an array of prenatal tests that can detect problems and issues — but not always cure them. What happens next for those parents faced with a terminal diagnosis of a child in the womb? While most people have heard of palliative care and hospice services for terminally ill people for whom death is imminent, what about pregnant mothers who receive a diagnosis that their baby is expected to die at or shortly after birth? These families face tremendously different challenges and concerns.
Perinatal hospice and palliative care is succinctly described at PerinatalHospice.org as, “an innovative and compassionate model of support for parents who find out during pregnancy that their baby has a life-limiting condition and who choose to continue their pregnancies.”
[lz_infobox]Some parents wonder, How can I start a perinatal hospice or palliative care program? “Many programs have started with the inspiration of one person — perhaps a caregiver or a parent,” says PerinatalHospice.org. “Most programs are based in hospitals or clinics, some are hospice-based, and a few are faith-based or independent.”[/lz_infobox]
The word “perinatal” refers to the time periods just before and just after childbirth. PerinatalHospice.org lists the perinatal palliative care and hospice programs available in the U.S. and internationally. In most instances the mother continues to receive prenatal care through her own obstetrician, alongside the services perinatal hospice and palliative care programs provide — grief counseling, support groups, chaplain services, and comfort measures for the baby after birth including nutrition, pain management, and when indicated, medical intervention.
Doctors and nurses are sensitive to the parents’ wishes for time to bond and say hello to their beloved child before then saying goodbye.
Amy Kuebelbeck operates the website and has intimate knowledge of the benefit these programs provide to families. She learned during her pregnancy with her son, Gabriel, that he would not live very long after birth.
In her book, “Waiting with Gabriel: A Story of Cherishing a Baby’s Brief Life,” she wrote, “What followed was an extraordinary journey of grief, joy, and love as we waited with Gabriel, simultaneously preparing for our son’s birth and for his death. Despite some wrenchingly aggressive surgical options, no one could give our son a good heart. So we set out to give him a good life.”
Her determination was as palpable as her love for her son: “Yes, Gabriel was going to die. But first he was going to live.”
In addition to her memoir about Gabriel, Kuebelbeck is co-author with Debra L. Davis of the book “A Gift of Time: Continuing Your Pregnancy When Your Baby’s Life Is Expected to be Brief,” a compassionate and crucial resource for parents facing a poor prenatal diagnosis.
PerinatalHospice.org lists more than 260 programs worldwide. Six such programs exist in the greater Philadelphia area where I live, including a program at Delaware County Memorial Hospital in Drexel Hill, Pennsylvania.
Kathy Macagnone is a registered nurse who worked in the maternity unit at DCMH for 25 years and has been the perinatal bereavement coordinator at DCMH for eight years. “When patients are facing the loss of their baby, they can feel they have lost control,” she told LifeZette. “I want to give them back some of that control by giving them the opportunity to plan for the details of the birth and care of their baby. Education and pre-planning can take some of the unknowns away and can ease some of the burdens once the baby is born.”
Some grieving parents are comforted by holding a memorial service and by creating mementos. Many hospitals offer parents footprints or photographs of their baby. Now I Lay Me Down to Sleep (NILMDTS) is a nonprofit organization of professional photographers who offer their expertise and artistry free of charge to capture “remembrance photos” that parents treasure after their deep loss. Families who endure the loss of a child without the benefit of a local perinatal hospice program can use the resources available at the PerinatalHospice.org website, as well as ask their caregivers to consider offering formal support services.
Macagnone said she started the perinatal hospice and palliative care program at DCMH after she “was faced with a situation six years ago that highlighted the lack of support for families whose baby has been given a fatal or life-limiting diagnosis. I felt I needed to advocate for them.” Her commitment to the families in her care goes beyond the time period of immediate medical need. She follows up with patients who attend the new perinatal loss support group at the hospital.
“This aspect of my job is extremely difficult,” she shared, “but I am very gratified that I am fulfilling my desire as a nurse to help people. I know this program makes a real difference.”
A difficult road is easier to walk with others beside you. And that’s what these programs offer — the comfort of not having to go it alone.