The Neonatal Comfort Care Program
Most babies born in hospitals go home healthy with happy parents, but for some born with life-limiting conditions, these babies may have only weeks, days, or even hours to live.
Columbia neonatologist Elvira Parravicini, MD, associate professor of pediatrics at CUMC, has transformed the way these infants are cared for, giving parents special time to enjoy motherhood and fatherhood for as long as their child lives.
Dr. Parravicini became a neonatologist because she wanted to save babies’ lives. “I never imagined I would end up taking care of babies born with terminal illnesses who are destined to live very short lives,” she says.
Her life changed about 10 years ago during a routine meeting with other physicians to discuss the care of expectant mothers who had just learned their children would be born with grave conditions not amenable to medical treatment. Most families facing the news that their baby will only live for a very short time choose to end the pregnancy. This meeting was unusual: Two families, each carrying a fetus with trisomy 18, wanted to deliver their babies.
If they survive the delivery, babies born with trisomy 18 can have multiple life-threatening problems, including structural heart defects, airway obstruction, and profound motor and cognitive disabilities. Only 5% to 10% of these infants reach their first birthdays.
As the physicians discussed their options, Dr. Parravicini raised her hand and suggested comfort care. “To tell the truth, I had no idea what comfort care meant at that moment, but I wanted to affirm that there was a way to take care of them,” Dr. Parravicini wrote in a 2014 article describing her intuition for what came to be an innovative treatment for these fragile yet precious babies.
Dr. Parravicini decided to revitalize the term comfort care. Traditionally this term has been used to indicate a plan of care that strives to keep the baby free from pain but does not address several other basic needs of a baby, such as bonding, warmth, hunger, and thirst. “With comfort care, taking care of these babies is sometimes more complicated and time-consuming than with other infants,” Dr. Parravicini says, “and can even include surgery to improve the baby’s quality of life. Whether a baby has a short life or a long one, he/she only needs love and comfort, so we always ask ourselves, ‘How can we help the baby be comfortable?’”
The baby’s time with parents and other family members is prioritized, and babies are placed in postpartum private rooms with their mothers, not in the hectic NICU, to give parents space and time to hold, feed, and bond with their children.
As word spread about Dr. Parravicini’s program, more families chose to deliver their terminally ill babies at Columbia. Over time, with the support of philanthropic donations, Dr. Parravicini built a dedicated team consisting of a nurse coordinator, a bilingual social worker, and a program manager. Assisting the core team are a high-risk obstetrician, labor and delivery room nurse, speech pathologist, lactation consultant, child life specialist, psychologist, and chaplain.
The Neonatal Comfort Care Program helps families navigate the practical and emotional challenges of caring for a baby with a life-limiting condition from diagnosis through delivery and beyond, including short- and long-term bereavement support.
The Neonatal Comfort Care Program now helps more than 100 families each year. Dr. Parravicini and her team are also committed to education by teaching professionals at Columbia and in other institutions in the United States and internationally. They hope their specialized approach will become the standard of care for these fragile babies around the world.
“We use all of our medical knowledge and humanity to care for these babies so that they and their parents can experience the beauty of love and welcoming,” says Dr. Parravicini.
For more information, visit the Neonatal Comfort Care Program website at neonatalcomfortcare.com.