When pregnant couples discover problems with their babies, Seattle Children’s Prenatal Diagnosis and Treatment Program helps them make some of the toughest decisions they’ll ever face.
When an ultrasound revealed a problem with her baby’s heart, Melinda Deitz – then five months pregnant – was referred to Seattle Children’s for a fetal echocardiogram – a test to pinpoint what was wrong.
Deitz could feel the baby moving in her belly as she and her husband, Rich, waited for the results. They hoped everything was OK or that the problem was easy to fix. But when they saw the look on Dr. Mark Lewin’s face they knew it was serious.
“It’s pretty bad,” Lewin told them as he laid heart diagrams onto the table. One of them showed a normal heart – blue blood coming in the right side, bright red blood exiting the left. But the Deitzes’ baby’s heart looked different – much different. He had a rare birth defect called hypoplastic left heart syndrome (HLHS). The left side of his heart hadn’t formed correctly and the ventricle was a fraction of the size it was supposed to be, too small to collect much blood and too weak to pump it through the body.
Lewin explained that doctors can use a series of surgeries to repair HLHS, but cautioned that the Deitzes’ baby’s condition was especially complex and he might not survive the pregnancy.
“My world came crashing down,” Deitz remembers. “I was bawling and Rich was crying – we just didn’t know what to do.”
Expert prenatal diagnosis
When Lani Wolfe started her career as a surgical nurse practitioner in the 1990s, parents usually didn’t know their babies had birth defects until shortly after birth. Wolfe remembers seeing tiny babies rushed into the operating room – and watching parents struggle.
“Joy would turn to panic,” she recalls.
That changed as ultrasound technology improved and genetic testing became a routine part of prenatal care. Now hundreds of couples come to Seattle Children’s each year after getting an early warning that something might be wrong with their pregnancy. Wolfe, now a nurse practitioner in Seattle Children’s Prenatal Diagnosis and Treatment Program, is part of the team that guides these families through the comprehensive care they need to understand their options and plan care for their babies.
Some parents come to the program because they have a family history of birth defects or other issues that places their pregnancy at higher risk. Some come for fetal MRIs, ultrasounds or echocardiograms to follow up on prenatal tests that showed a brain malformation or gastrointestinal defect. Some come for genetic counseling to understand if there is a genetic cause for the birth defect, which can give a clearer picture of their baby’s prognosis.
“We’ve seen thousands of fetuses with serious problems. Our radiologists and ultrasound technicians know exactly what to look for when capturing images of a fetus, and our team understands how conditions start, how they develop and what they might look like years down the road,” says Lewin, who leads the prenatal program and co-directs Seattle Children’s Heart Center. “It helps us make fast, accurate diagnoses, which is critical because these parents don’t have much time to make decisions.”
Life’s toughest choices
Families face a range of options depending on their baby’s condition and when it is diagnosed. There are standard treatments for conditions like gastroschisis, which occurs when the intestines form outside the belly and can be fixed by surgeons right after birth. But conditions like brain malformations can be harder to treat and can profoundly affect a child’s life.
Wolfe and Kiana Siefkas, the prenatal program’s genetic counselor, answer parents’ questions and discuss their baby’s condition and the treatment possibilities. They help families envision what the child’s life will be like and what it will be like to care for them. And they encourage parents to find a decision they can be at peace with.
“Some parents decide they love their baby so much that they feel compelled to pursue every treatment,” Wolfe says. “Others decide they love their baby so much that they don’t want to put them through procedures that may or may not improve their baby’s condition. They’re equally valid choices – our job is to support families as they find the decision that’s right for them.”
When the Deitzes came back for their second appointment with Lewin, they learned their baby’s problem was so severe that he would probably need a heart transplant as soon as he was born. If the transplant worked, their son would need to see a cardiologist for the rest of his life. He would face a higher risk of learning disabilities and other problems. And he might need another transplant later in life.
Wolfe connected the Deitzes with families who had been in similar circumstances, including one whose baby needed a heart transplant.
“It helped us cope to see that other families were going through the same thing,” Deitz says. “We decided to take a leap of faith.”
Coordinating complex care
Prenatal conditions require a team that includes everyone from high-risk obstetricians who monitor a woman’s pregnancy to pediatric specialists who will care for the baby after birth. The prenatal team brings together these providers to manage the pregnancy and to develop treatment plans and timelines that include everyone’s input and expertise.
“It can be hard to predict how some babies will do once they’re born, so it’s important to map out the options and prepare for the possibilities,” Lewin says.
Wolfe also helps with details like scheduling a family’s appointments with different specialists for the same day and helping set up overnight accommodations at the Ronald McDonald House for families who live out of town.
“We try to make their trips as easy and short as possible,” Wolfe says.
Deitz came back to Seattle Children’s several times for ultrasounds that showed her baby was growing bigger and stronger. Her obstetrician, Dr. Edith Cheng from UW Medicine, attended each visit and worked closely with Wolfe and Lewin. The family also toured the hospital to get comfortable with their future surroundings.
“It gave us one less thing to worry about,” Deitz says.
New heart, new hope
Right after Deitz gave birth to Michael at University of Washington Medical Center last June, he was rushed to Seattle Children’s Neonatal Intensive Care Unit (NICU). He was placed on medications to keep his heart functioning and underwent surgery to help it circulate blood.
“The doctors and nurses knew exactly what to do – you could tell they had been in that position hundreds of times,” Deitz says.
Four months later, Michael received a heart transplant. He was able to go home to Gig Harbor two and a half months after that – just two days before Christmas. It was one of the Deitzes’ most joyous holidays ever.
“We exchanged gifts, dressed him and his sister up in matching reindeer PJs, and spent time with their grandparents,” Deitz says.
Michael still faces a long road. Babies with complicated conditions come back to Seattle Children’s for regular visits so doctors can track their health, step in early if complications arise and help prepare them for life as an adult with a health issue.
“Giving good care to these families means more than helping them at the start of their journey,” Lewin says. “It means being there every step of the way.”