DCMH Program Helps Pregnant Moms Cope with Difficult Diagnoses
Drexel Hill, Pa. – There’s nothing like the excitement of preparing to welcome a new baby into the world. But along with joyous moments, there are also sometimes sad moments, where expectant moms find out early on in their pregnancies that there is something seriously wrong, and that their babies will face fatal or life-limiting complications. It is here—in these difficult times—that obstetric nurse Kathy Macagnone, B.S.N., RNC-OB, of Delaware County Memorial Hospital (DCMH), has found a special calling.
Recognizing that these moms and families need extra support, Macagnone has developed a Perinatal Palliative Care Program at DCMH to help them through these difficult diagnoses. For moms who decide to continue their pregnancies, the Perinatal Palliative Care Program at DCMH provides support through every step of the process. Maternity care is still provided by the patients’ OB/GYNs or midwives, but the program provides an extra layer of support to help moms answer questions, and then plan accordingly.
“It important for moms who are going through this to have someone to talk to so that they understand their diagnoses and what plans they can make,” Macagnone says. Deciding what to do when faced with this situation is a very personal matter, and the nurses in the Perinatal Palliative Care Program can provide information and support to help patients move forward with whatever choice they make. If there’s a silver lining for parents, it’s in helping them take control back and make informed decisions that honor their personal beliefs and wishes for their families, Macagnone says.
In November 2014, Macagnone will attend the 19th Biennial International Perinatal Bereavement Conference in San Antonio, Texas, where she will present a poster about the DCMH program and share ideas and information with others in the health care community.
“Crozer-Keystone’s maternity centers at both DCMH and Crozer-Chester Medical Center take great pride in the services we provide, and we are always looking for ways to enhance the experience for moms who entrust us with their care,” says Thomas Bader, M.D., chairman of OB/GYN for Crozer-Keystone Health System. “The Perinatal Palliative Care Program at DCMH is a great example of how our providers go above and beyond to support our patients’ needs and offer that extra level of care that makes patients feel good about choosing us.”
Macagnone notes that the idea for the program began several years ago, when she was approached about a patient who had stopped care after finding out that her baby had a life-limiting condition. The mom then came back to DCMH for care much later in her pregnancy, after coping with this diagnosis for months on her own. Since that time six women have been helped by the program. One of these moms was Julia Staniscia of Upper Darby, who delivered a beautiful baby boy, Elijah Gabriel, with the caring support of the DCMH staff.
Looking back today, Staniscia says that she “never in a million years” thought that her genetic testing would come back positive for Trisomy 18 —a serious and life-limiting genetic condition. “I was in shock,” she says. “I knew it was a moment that would change my life forever.”
From the very moment she found out, she knew she wanted to meet her baby, and the nurses in the palliative care program helped her do just that. Staniscia recalls that when she expressed her wishes, the nurses gave her a birth plan, and that “it mattered to them” what she wanted for her family and her baby.
“They were already thinking ahead. I only thought about him,” she says of Elijah, who made it to full term and was delivered by C-section at DCMH, weighing 3 lbs., 14 oz.
Throughout her pregnancy up through the time that she was able to bring Elijah home to her husband, Jose, and her children Nicholas and Joseph, the nurses in the palliative program “had her back,” she recalls. “I really felt like royalty – like everything was handled.”
The 25 days, 18 hours, and three minutes she and her family had with Elijah are moments she will keep with her forever. She tears up when she talks about Elijah and the palliative care she received at DCMH.
“I don’t want his life to have been lived in vain,” she says, grateful for this opportunity to share Elijah’s story with others.
In addition to helping moms manage existing pregnancies, Macagnone notes that the palliative program at DCMH can also provide guidance about subsequent pregnancies. “Sometimes, moms who have experienced a loss are reluctant to return to the same hospital for a subsequent pregnancy, but that doesn’t seem to be the case for us,” Macagnone says. Two moms in the program have returned to deliver healthy babies at DCMH. Staniscia, who is now pregnant again and doing well, will be the third. She keeps in regular contact with Macagnone and will soon return to DCMH to deliver and meet her little girl, “Baby Hope.”
“I wouldn’t go anywhere else,” she says.
For more information, please call the Perinatal Bereavement Services line at DCMH at (610) 394-4798. For more information about the comprehensive maternity services provided at DCMH and Crozer-Chester Medical Center, call 1-855-CK-BABIES (1-855-252-2243) or visit http://4Ubaby.crozerkeystone.org.