Every day, my maternal-fetal medicine colleagues and I work with families facing complex pregnancies. Some of them involve congenital abnormalities – many people don’t realize that as many as 3 percent of babies born in the U.S. have congenital abnormalities, or health problems that develop before the baby is born. Many require a lot of advance consultation and planning around delivery, even in the face of uncertain outcomes. This can be incredibly taxing on expectant mothers and families.
And while the health of our patients and their babies is our first priority, we have realized over the years that these complex, frustrating, and scary situations require more than medical care. These patients and families need a deep level of emotional and physical support. We use palliative care, a growing field of medicine, to provide that specialized care.
Palliative care provides relief from the pain and emotional stress that accompany serious health conditions. Hospice care, or pain management at the end of life, is perhaps the most well-known type, but the field has broadened over the years to include more than terminal illness or end-of-life care. Doctors are beginning to use palliative care models earlier and in more conditions – including complex pregnancies – in an effort to help patients through difficult times. My goal is to have patients, families and medical staff view palliative care as a way to help clarify a family’s priorities and goals around the birth of a child when things aren’t going to go as they had hoped and planned.
Nationally, nearly one-third of patients feel they receive substandard care after their baby is diagnosed with an anomaly during pregnancy, according to “State of the Science on Perinatal Palliative Care,” a report published in the Journal of Obstetric, Gynecologic and Neonatal Nursing. This is a clear indication that not only is palliative care necessary for pregnancy, but also that doctors and other providers need more training in how to properly implement it. One family that really embodied that need here in Dallas was the Zapotockys. Their pregnancy experience caused us to look critically at how we can provide formal palliative care in our practice.
Tyler’s story: Why palliative care matters for pregnancy
Adam and Whitney Zapotocky learned early in their pregnancy that their son, Tyler, had not developed kidneys. Without kidneys, no amniotic fluid can develop around the baby, and the lungs can’t develop. Faced with the knowledge that Tyler would die soon after birth, Adam and Whitney wanted to honor his short life. Ultimately, they chose to donate Tyler’s organs. During the pregnancy, we supported Adam and Whitney through their unique emotional ups and downs and helped them connect with an organ transplant organization.
Related reading: Tyler’s legacy: Couple finds way to honor son’s short life
Prior to the Zapotockys’ experience, when we learned that a baby wouldn't survive after birth and no treatment was available, we would refer the families back to their local doctors and suggest they deliver in their own communities. But we’ve found that many providers are uncomfortable with these complex situations, and patients often choose to deliver with us because they want the additional support.
Because of this, we’ve begun to launch programs and training to help our staff, from the front desk team to the surgeons, understand the importance of palliative care and how to provide it better. When we greet patients at appointments or for check-in at labor and delivery, we must be aware that not all families will be taking a newborn home right away, or at all. And doctors must be able to have meaningful conversations with patients and their families. As doctors, we tend to focus on diagnoses and treatment plans, but we also must be emotionally attuned to the needs of our patients. It is very easy to retreat into our medic roles and forget that the fetuses in which we diagnose problems are already cherished sons and daughters of our patients.
How we identify patients who could benefit from palliative care
All patients can benefit from receiving care from supportive, emotionally intelligent providers. But we look for certain criteria when providing more formal palliative care, such as:
- Extremely premature birth: The American College of Obstetricians and Gynecologists (ACOG) considers extreme prematurity to be birth before 28 weeks of pregnancy. The earlier a baby is born, the lower their likelihood of survival and the greater their risk of lifelong physical or cognitive limitations. Discussions about family goals and values are vital in these situations.
- Prenatally diagnosed conditions: These are the health concerns we can identify before the baby is born that will require complex care during pregnancy, additional care after birth, or conversations during pregnancy about quality of life or end of life shortly after birth.
- Unforeseen birth complications: This might include emergency cesarean-section deliveries, as well as incidents in which infants have to spend time in intensive care or suffer unexpected diagnoses or birth trauma.
When a family is facing a complex pregnancy, we often aren’t the first health system with which they’ve spoken. Often, they’re referred to us from their local doctor for specialized care or procedures, and they likely have received recommendations from other specialists as well. In these instances, palliative care is so important – we want to support these families and give them actionable, appropriate steps to heal and move forward together.
UT Southwestern currently offers two fetal care programs in Dallas. One involves heart conditions, and the other covers other congenital health concerns, such as spina bifida or kidney problems. We partner with Clements University Hospital and Parkland Hospital for maternal care and Children’s Medical Center for infant care. Our programs serve families who travel here from across North Texas and from other states to receive specialized care for their babies.
The ultimate goal of a palliative care program is to make medically and emotionally complex care experiences better for patients and families. It takes a village to care for these families, and that’s the kind of experience we work to create for our patients. We believe that a palliative care model will help us provide the best possible care for any family facing a difficult pregnancy outcome, regardless of the exact situation.
Request an appointment if you or a loved one needs complex pregnancy care.