Your ultrasound reveals that your baby will have special needs. Here's what to expect going forward.
Excitement, and sometimes a little anxiety, are almost always present when you’re expecting. Even after reading all those pregnancy books, nothing truly prepares you for unexpected news. Learning that your baby will be born with a complication or congenital issue turns your expectations upside down. Going forward, know that your OB/GYN and hospital where you deliver has your back.
Your Support System
Your doctor says your baby may have a congenital anomaly. You’ll soon become familiar with the Neonatal Intensive Care Unit (NICU), Maternal Fetal Medicine (MFM), possibly pediatric surgeons, specialized nurses and more. “At TriStar Centennial Women’s Hospital, there’s a dedicated team known as Advanced Infant and Maternal Services (AIMS),” says Hannah M. Dudney, M.D., OB/GYN with Centennial Women’s Group in Brentwood. “Each mother is assigned two ‘Patient Navigators’ to assist with appointments prior to delivery and make sure the parents understand their diagnosis and test results.” Before delivery, you will tour your hospital’s NICU and meet the doctors who will care for your baby. You will thoroughly detail a birth plan designed to fit the unique medical needs of your baby. It’s important to note that not all deliveries require a C-section or early induction.
There are many types of congenital problems that babies can be born with. Some of them are mild and cosmetic while some are incompatible with life, such as a major heart or brain defect. “If your OB provider has noted abnormalities on an ultrasound, then often they will refer you to a maternal fetal medicine specialist for a detailed ultrasound, counseling and possible genetic testing,” says Connie Graves, M.D., an OB/GYN and director of perinatal services, maternal fetal medicine for Saint Thomas Health. If it’s determined that surgical intervention or diagnostics will be required immediately after delivery or even later after birth, you will be referred to specialists such as a pediatric cardiologist or even a pediatric surgeon. “This allows the team to be on the same page when the baby is born and for a treatment plan to be developed,” Graves says.
“There are a multitude of maternal and fetal complications that can cause an early delivery, but some congenital anomalies are best cared for with a full-term baby,” says Dudney. She adds that while forms of congenital heart disease are best repaired in larger babies, pregnancies complicated by other conditions (pre-eclampsia, severe fetal growth restriction, kidney and bowel anomalies) may require induction to allow for individualized care of mother and Baby. “Induction is often recommended to allow timing of procedures,” says Graves. “For example, if a baby with an abdominal wall issue or heart defect needs immediate surgery, it may be recommended that induction be done so that the surgeon can be available for the procedure,” she adds.
After delivery, some babies may require immediate assessments and interventions such as surgery. At these deliveries, Dudney says there are two teams: one specialized for the care of Mom and another designed for Baby. The NICU team includes a NICU nurse, respiratory therapist, a neonatologist or neonatal nurse practitioner, and sometimes the pediatric surgeon. Each individual diagnosis requires unique procedures that Baby needs and can include detailed ultrasounds of the heart, brain or abdomen, small IV lines placed in the bellybutton, or specialized medications. “Some will start immediately after a brief period of family bonding and others will be in the days to weeks that follow,” says Dudney. “Throughout this process, the AIMS navigators guide the family through this often complicated process. “Often there may be no special treatments immediately after delivery as most common defects are repaired three to six months after delivery,” adds Graves. “Infants with heart defects usually have a heart ultrasound (ECHO) in the first one to two days after delivery, but often repair of the defect may be deferred. Babies with spine defects or abdominal wall issues require surgery immediately after delivery,” she adds.