Brenner Children’s Hospital’s NICU Palliative “Care Always” Program



The birth of a child is always a miracle, but for many families that miracle comes with challenges that they are not adequately prepared to handle. While many mothers and fathers face these challenges alone, the experts at Wake Forest Baptist Medical Center’s Brenner Children’s Hospital decided to change that.

“We call our program ‘Care Always,’” said Dr. Christine Bishop, a neonatologist and the director of the neonatal and perinatal palliative care program at Brenner. “I created this program when I moved here two years ago, and it has grown over the past two years. We now have a nurse practitioner clinician and coordinator, and a growing group of parent and community partners.”

“Neonatal and perinatal palliative care provides prenatal care to families who have a fetus who has been diagnosed with a life-limiting condition,” Bishop said. It also provides care that focuses on quality of life for newborns and infants who have complex, potentially life-limiting medical problems, as well as end-of-life care for dying infants and their families.

“As part of this process, we have a clinic at the Comprehensive Fetal Care Center. We see mothers and their partners prenatally to provide counseling and support, in conjunction with their prenatal care, by our maternal fetal medicine specialists, as well as patients referred from Ob-Gyn physicians in the community,” Bishop said. “Many times, we are seeing them to discuss decision-making at birth and create a birth plan for when the baby is born. We then help coordinate information-sharing between the prenatal subspecialists, and dissemination of the family’s birth plan.” This strategy ensures that everyone taking care of the mother and the baby know the plan and how the family would like their child cared for.

“For infants who are not diagnosed prenatally, we see them in the hospital and provide family support, and contribute to aspects of clinical care,” continued Bishop. “We focus on making sure that the pain and suffering are minimized and quality of life is enhanced, and if the baby is dying, we help coordinate and provide end-of-life care. We are not a hospice organization, but we often work very closely with our community hospice folks.”

The team effort involved in running this program is astounding, but the difference it has already made in the lives of patients is even more remarkable. Two special women, Kelly Warden and Mary Clark Hauser, are a huge part of the success of this program.

“Last year, a family who lost their daughter wanted to contribute to our program as a way of honoring her,” Bishop said. “I met with the mother, Mary Clark, and Kelly from Woobiebeans jewelry, to discuss how we might do this. Mary Clark had a necklace that had been given to her by a friend with her daughter’s name – Sadie Grace Hauser – on it, and throughout her pregnancy and after her daughter’s birth and death she found comfort in having it near her. She wanted to use the donations from her daughter’s memorial service to contribute to the program, and with Kelly’s expertise, we designed bereavement/memorial necklaces and coins for our parents.

“The necklaces for mothers and coins for fathers say ‘always’ on them to signify that even though their beloved baby is not in their arms, he or she will always be in their hearts. We call our program Care Always because even when there is no hope for a cure, we will always provide care for these babies and families. This mother continues to raise money for the fund, and we have raised money in other ways as well. The proceeds from the fund do not just support the bereavement jewelry; we are also developing bags with support materials for every family we see in clinic and every family who loses a precious baby in our care.” 
All aspects of this program focus on helping families through very difficult times, and there are many ways in which the community can support its efforts.

“A really important aspect of the program is to increase awareness of this kind of loss and that this care is available,” Bishop said. “Our program is new in the Triad, and while it is very specialized, there are many families in the community who do not know that they have access to this kind of care for their infants and pregnancy. A few tangible examples of ways to help include donations to help fund the memorial necklaces and coins, volunteers sewing beautiful blessing and burial gowns for babies of all sizes, materials for memory-making activities, donations to help families pay for cremation or burial, or donations to buy heartbeat recorders so that families can record their infant’s heartbeats from their ultrasounds. If a community group is interested in helping, they can email carealwaysws@gmail.com, and we can discuss how they can become involved.”

For more information, visit the website www.BrennerChildrens.org/NICU. You can also donate to the fund on the Brenner Children’s Hospital online donation page under the designated drop-down tab for NICU Palliative Care, or by simply designating funds donated to Brenner Children’s for “NICU Palliative Care.” The funds will be used to support programs and goods for the families and babies.

 


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