Suzanne and Matt were expecting another child. It was an exciting time for their growing family, until they learned that their baby, Gianna, had a chromosomal anomaly called Trisomy 13. Babies with this condition do not often live long beyond their birth, and more often die before they ever get a chance to live.
Because the parents of children with Trisomy 13 are frequently counseled to abort their child; to take their child’s life before its time; to do what some medical professionals believe will quell the grief and end the suffering.
Suzanne and Matt were fortunate. Within the Arlington Diocese lies a rare and beautiful gem. It is called Tepeyac Family Center (TFC), a work of Divine Mercy Care, its non-profit parent organization founded by Dr. John Bruchalski. At TFC, Suzanne and Matt received not only superior medical care, but also the support they needed to carry Gianna to term through a program called Kristen Anderson Perinatal Hospice.
The Kristen Anderson Perinatal Hospice Program (KAPHP) is a program of the Tepeyac Family Center designed to provide a multi-disciplinary approach to pregnant women, their babies and their families as they await the birth of their child who has received a life-threatening diagnosis. It exists to provide pregnant women and the persons most intimately involved with their child spiritual and psychological comfort while meeting the individual medical needs of each mother and her sick child. The program offers a continuum of support from the point of diagnosis to a year thereafter.
Perinatal Hospice provided Suzanne and Matt a safe place to deal with the emotions of having a poor perinatal diagnosis by respecting every baby’s dignity and right to life as a child of God. Suzanne recalled:
…[W]e went to see Dr. B. from Tepeyac. There’s nobody better… truly and I am thankful to God for him. He was the unfortunate one to break all of the news to us. Not only did she have a cleft palate and lip and her heart was missing the left side, but also her kidneys didn’t work. He told us she was probably a sleepy baby because the ammonia builds up in her body from the non-working kidneys and makes her sleepy. The esophagus may or may not be connected, they weren’t sure. Also, the hemispheres in her brain…didn’t seem to be connected. She has extra digits on her hands and feet. Essentially, she has multi-system failures…with so many problems, her frail little body could never put up with the amount of work that would need to be done.
We came up with our plan – try to get me to 35 weeks and do a c-section. The doctor or a priest would then baptize her. Then the doctor would cut the cord and hand her to Matt and I so she could spend whatever time she has here with us…Dr. B. told me she was in no pain, she doesn’t realize she’s sick, she’s really just like every other baby right now.
Dr. Bruchalski helped this couple find peace in their situation. This type of care is rare. But, on the horizon lies hope for these medically fragile little ones.
An organization called Be Not Afraid (BNA) was established in 2002 by parents, practitioners, friends and family who have experienced or supported poor perinatal diagnoses. Guided by the directives of the Catholic Church, their mission is to provide:
…a peer ministry which provides local support for parents carrying to term following a poor prenatal diagnosis (PPD). BNA provides pastoral care, grief education and support…eas[ing] the emotional suffering and feelings of isolation experienced by parents by offering a ministry of presence that creates community around the experience of a diagnosis and the baby to be welcomed.
BNA will host its First Annual Service Provider’s Conference on 20 & 21 October 2011 in Charlotte, NC at St. Gabriel Catholic Church. Space is limited for this free event, so be sure to register early.
To register email the following information to: email@example.com
A Pastoral Care Manual to help train others to serve families experiencing a poor perinatal diagnosis is available for $15 upon request.
The conference will feature Dr. John Bruchalski, who will share his vision for perinatal hospice as a non-medical service, and Dr. Marcella Colbert, Director of the National Gabriel Project Office, speaking on the healing value of supportive community in times of crisis. Session will also be held on prenatal diagnosis and disability advocacy, the importance of birth plan writing for parents carrying to term, memory-making for parents experiencing loss, and other related topics.
Suzanne and Matt were blessed to have perinatal hospice available at Tepeyac Family Center when baby Gianna and their family needed it most. Care and nurturing of both the child and family provided healing and closure. Be Not Afraid is making it possible for more families to receive this type of compassionate care and the information they need to carry their special babies to term.