Supporting The Unique Journey To Healing: The Perinatal Palliative Care Program

When an unborn child is diagnosed with a disease, especially a fatal disease, it is a tragedy for the expectant mother and her family. During this crisis, the family may experience shock, anger, disbelief, and despair. To help families come to terms with the situation, AHN offers palliative care services that include emotional, spiritual, social, and symptom support.

Dr. Marta C. Kolthoff, a board-certified OB/GYN and reproductive geneticist, leads the multidisciplinary AHN Perinatal Palliative Care team at West Penn Hospital.

“We recently secured a very generous gift for the Perinatal Hospice [and Palliative] Program, under the direction of Dr. Marta Kolthoff, which was a combination of an outright gift and a planned estate gift,” said Allie Quick, AHN Chief Philanthropy Officer. “The beauty of that gift structure is that Dr. Kolthoff has immediate funding to support the program over the next 10 years, as well as a vehicle in place to fund the program in the future.”

Perinatal Palliative Care is a fetal hospice program that addresses the needs of families from the time a diagnosis is made and continues to support them for months after birth. The program brings together professionals from maternal-fetal medicine, reproductive genetics, neonatology, nursing care, and bereavement/social work services.

“I really wanted to develop a program to help these families and meet the special needs they’re facing with a lethal or severe fetal diagnosis,” Dr. Kolthoff said. “Over time, while I was developing a program, I realized they had very distinct and complex needs.” It starts with acknowledging grief and providing emotional support, then making sure the family understands the diagnosis and the baby’s prognosis. The next step is providing families with as much information as possible.

“Parents always want all the information they can get,” Dr. Kolthoff said. “There’s a lot of information and communication that needs to be done.”

On the clinical side, Dr. Kolthoff’s team works with both the doctors and nurses involved with delivering the baby, making sure they understand the possibility that the baby’s condition might not be compatible with life.

Afterwards, a perinatal bereavement team follows up with the mother and family to discuss any questions they might have and to check on the mother and other family members.

Because of the very kind donation by an anonymous donor, the AHN Perinatal Palliative Care program can continue to help all women who learn their babies aren’t expected to live. When pregnancies do not go as planned, there are people here at AHN to help.