MANAGING A DEVASTATING DIAGNOSIS
A mother’s journey through a congenital heart condition
Imagine you’re expecting a child. At your 18-week ultrasound, amid all the excitement that comes along with pregnancy, you receive devastating news. Your unborn baby has been diagnosed with hypoplastic left heart syndrome, or HLHS. It’s a congenital heart defect in which the heart’s left side is underdeveloped. The diagnosis leaves you feeling terrified and with many questions.
While the journey from this diagnosis to an infant’s birth may differ for each patient, the family will encounter a variety of providers and treatments, requiring a great deal of patience.
Despite the complex diagnosis, mothers of babies with HLHS are not alone. About 1 in 100 babies are born with the congenital defect. Thanks to attentive health care by teams with expertise managing infant conditions like this, they can grow up to lead healthy lives.
STEP 1:
An obstetrician detects something wrong with how an unborn baby’s heart is developing, typically at the
18-week appointment.
STEP 2:
The mother is sent to a maternal-fetal medicine doctor, or MFM, for confirmation of the diagnosis, who then refers the patient to a fetal cardiologist.
STEP 3:
The fetal cardiologist conducts a detailed fetal echocardiogram (ultrasound of the heart). During the same visit, the mother and family receive in-depth counseling regarding the diagnosis and its medical and surgical implications, including the need for three-stage surgeries.
The medical team will discuss surgical steps and outcomes for each stage, as well as the long-term cardiovascular and neurodevelopmental expectations for the infant.
STEP 4:
The mother and family members engage in multidisciplinary counseling with fetal cardiology, neonatology and maternal-fetal medicine physicians to discuss the labor and delivery plan.
Genetic counseling is also offered.
STEP 5:
The mother and family members are seen during follow-up appointments at the Fetal Cardiology clinic every four to six weeks to check on the fetus’ heart through a series of fetal echocardiograms.
STEP 6:
The patient’s case is discussed in a multidisciplinary conference with neonatology, obstetrics, maternal fetal medicine, fetal cardiology and other subspecialists such as pediatric surgery and pediatric neurosurgery, for example, depending on the fetus’ needs.
STEP 7:
The mother’s labor is induced at term, either vaginally or through a C-section.
STEP 8:
Once the baby is delivered, the neonatologist stabilizes the baby and starts an IV medication called prostaglandin to keep the vessel open.
STEP 9:
The baby is stabilized and taken to the adjacent Neonatal ICU, or NICU.
STEP 10:
The NICU team performs an echocardiogram to again confirm the cardiac diagnosis of HLHS.
STEP 11:
The NICU team places a line in the newborn’s umbilical cord and draws blood from the cord to conduct laboratory tests in preparation for the baby’s surgery.
STEP 12:
The baby stays in our Pediatric Cardiac ICU prior to surgery.
STEP 13:
Prior to surgery, the baby undergoes a neonatal abdominal ultrasound and MRI imaging for any neurologic abnormalities.
STEP 14:
A multidisciplinary medical team reviews the baby’s case during a UF Health Congenital Heart Center combined surgical/medical conference.
STEP 15:
The baby usually undergoes surgery five to seven days after birth.
