Todd and Tammy Smith's daughter, Abigail, became a patient at Children's before her birth.
Tammy Smith was eagerly anticipating the arrival of her ninth child. An experienced midwife, Tammy planned to have her baby at her home in Wasilla, Alaska. But then she heard a fetal heart arrhythmia during a prenatal check-up.
Like so many parents who eventually bring their child to Seattle Children’s, Tammy saw several specialists to figure out what was wrong. The local cardiologist and perinatologist thought her baby had a congenital heart defect called tetralogy of Fallot, but they also suspected that something else was going on.
After doing some research on the Internet and consulting with different cardiologists, Tammy became determined to get a referral to a children’s hospital.
Arriving in Seattle
After contacting several children’s hospitals in the western United States, Tammy decided to come to Seattle Children’s for her first visit at the Prenatal Clinic.
“I didn’t just end up at Seattle Children’s by chance,” she says. “I did research and I made a choice. Seattle Children’s is hands down the most forward-thinking hospital in terms of including families as part of the team. It’s great that Children’s invites parents to participate in rounds and lets them stay during shift change.”
Dr. Mark Lewin, medical director of the Prenatal Diagnosis and Treatment Program, looked at her fetal echocardiogram, and confirmed Tammy’s suspicion that her baby had tetralogy of Fallot with absent pulmonary valve syndrome. This serious congenital condition is so rare that Children’s only sees one or two patients each year who have it.
“It was a relief because we finally knew what was wrong,” Tammy says. “Dr. Lewin was awesome, and I felt supported and cared for by the whole team. I could finally breathe because I knew I was in the right place.”
Preparing for birth
Tammy would need to deliver her baby in Seattle in order to have immediate access to Children’s pediatric specialty care. There was a chance her daughter would be born early, so Tammy came to Seattle six weeks before she was due and had several Prenatal Clinic visits.
The Prenatal Clinic – now located in the Springbrook Building a couple blocks away from the main campus – arranges meetings with different pediatric sub-specialists as indicated by the fetal diagnosis and coordinates perinatal care with the high-risk obstetric team. High-risk obstetricians from the University of Washington join the prenatal team at Children’s for consultation and local delivery coordination.
“We think of pediatric care as a continuum that begins for families when they first find out that they are pregnant,” Lewin says. “When they first receive a diagnosis, they are going to start thinking about the implications for the child’s whole life. Our job is to start answering their questions and help them prepare for what’s to come.”
The team may include experts in cardiology, fetal diagnostic imaging, genetics, genetic counseling, neurodevelopment, pediatric surgery, neonatology, urology, craniofacial conditions, bioethics and social work.
“It is a gift to work with families as far upstream as it gets,” says Lani Wolfe, nurse practitioner in the prenatal program. “At a time of crisis, we’re in a position to dispel myths, decrease anxiety and set realistic expectations for families about the health of their unborn child.”
“We strive to explain any options that are available and strategize about family and geographic logistics as they prepare for what lies ahead,” she adds. “We are often the first encounter for families with Children’s, so we play a key role in building the foundations for that supportive partnership.”
In Tammy’s case, the prenatal team monitored her baby closely. She continued to see Lewin and his fetal cardiology partner, Dr. Meg Vernon. She also met with Wolfe; Dr. Gordon Cohen, division chief of Cardiothoracic Surgery; Dr. David Woodrum, neonatologist; and Dr. Calla Holmgren, a perinatologist who used to practice at the University of Washington Medical Center.
At a time of great anxiety and uncertainty, Tammy looked to the prenatal team for support.
“I was struggling to figure out how I would mother this child who would have different needs from my other children,” she says. “All I knew how to do was to snuggle up to my baby, nurse her, hold her and love her in my own home. I didn’t know how I would bond with her in such a different environment. But the prenatal team reassured me that I could do this and that they would be there to help.”
Arriving at the NICU
After Tammy’s little girl, Abigail, was born at the University of Washington Medical Center, the Neonatal Transport Team brought her to the Neonatal Intensive Care Unit (NICU) at Children’s.
“I can’t say enough about the nurses and doctors in the NICU,” she says. “I was exhausted and I needed to eat. I remember crying because I didn’t want to leave my baby and I couldn’t take her with me. Then an amazing nurse in the NICU promised she wouldn’t leave Abigail’s side. I trusted her, so I was finally able to take a shower and eat.”
During those first days at Children’s, genetic testing revealed that Abigail has velocardiofacial Syndrome (VCFS), which means that part of chromosome number 22 is missing. Many patients with this condition have heart defects and a cleft lip or palate. They may also have mild delays in cognitive development and increased susceptibility to infection.
Despite her serious heart condition, Abigail did so well that she was transferred to the floor within a couple days. She went home to Alaska in less than a week.
Coming back to the CICU
Abigail and her father, Todd, cruise the halls of Children's.
Seven months later, Abigail came down with a severe case of bronchiolitis. After being intubated in Alaska, she was airlifted to Children’s and admitted to the Cardiac Intensive Care Unit (CICU).
Due to her heart defect, Abigail’s branch pulmonary arteries were so large they were compressing her airway and exacerbating her respiratory illness. Once she recovered from the infection, Cohen performed a four-hour surgery to make her branch pulmonary arteries smaller and close the hole in her heart. He also used a bovine jugular vein to create a pulmonary conduit, which is necessary to provide blood flow to the lungs.
“Dr. Cohen and the CICU team were wonderful,” Tammy says. “They all treated me with respect and dignity. I talked a lot with the respiratory therapists and I knew the nurses by name. They were all so happy when Abigail was feeling better and started to play.”
Abigail is now a mischievous 2-year-old!
Now, Abigail is a mischievous 2-year-old who loves to play and climb all over everything.
She is receiving occupational speech therapy at home in Alaska to help her learn to talk. She also goes once a year for a check-up with Dr. Dona Brekke at Seattle Children’s Pediatric Cardiology of Alaska, and comes twice a year to the Craniofacial Clinic on the main campus in Seattle.
It’s quite a trip to come to Children’s from Alaska, but Tammy says it’s worth the extra effort. “Whenever I hear about a mother whose baby may have a prenatal condition, I tell them to go to Seattle Children’s,” Tammy says. “It’s the best place you can be if you know ahead of time that your baby is going to need a little extra help.”