Atrial Septostomy: Alistair’s Story
Patient Story Highlights
- Before birth, Alistair was diagnosed with a congenital heart defect, requiring specialized care at birth.
- His mother’s water broke, forcing Alistair to be delivered early at an alternate location.
- A Johns Hopkins All Children’s specialist flew by helicopter to perform a life-saving procedure shortly after Alistair’s birth.
- Soon after, Alistair got a helicopter ride to St. Petersburg for additional care.
The family joke is that Alistair was listening from the womb.
Bonnie, his mother, recalls recounting to her husband, Benjamin, that she feared her baby would need to be transported by helicopter for the specialized care he would need upon birth. As the family joke goes, Alistair thought: “Oh, yeah, sweet! I’ll take a helicopter ride!”
Alistair was diagnosed at a 23-week anatomy screening with transposition of the great arteries (TGA), a rare heart defect that occurs when the two main blood vessels leaving the heart are in abnormal positions. It can be life threatening and must be repaired. Bonnie was referred to experts from Johns Hopkins All Children’s Hospital who work in Sarasota County, Florida, where she lives. Karen Raimer, M.D., is a maternal-fetal medicine specialist with experience in high-risk pregnancies. Michelle Miller, M.D., is a pediatric cardiologist who works with the hospital’s Fetal Heart Program.
They confirmed the diagnosis and developed a plan where Bonnie would give birth on Jan. 8 at Bayfront Baby Place, which is located within Johns Hopkins All Children’s in St. Petersburg. Shortly after birth, Alistair might need an atrial septostomy, a cardiac catheterization procedure that helps boost a baby’s blood oxygen level. James Thompson, M.D., director of interventional cardiology at the hospital, has expertise in the procedure. Thompson and others were briefed on the case at a regular meeting of the Fetal Heart team.
Alistair — an homage to the family’s Scottish heritage and meaning “Defender of Men” — didn’t stick to the plan.
Change of Plans
At 3 a.m. on Jan. 8, Bonnie’s water broke. Bonnie, who had three previous children, didn’t have time to drive about 40 miles to St. Petersburg. They headed to nearby Sarasota Memorial Hospital, which has long had a collaborative agreement with Johns Hopkins All Children’s to provide joint pediatric services.
Between contractions, Bonnie explained at admission that she wasn’t the average expectant mother checking in.
“I said, ‘He has TGA, and he’s coming fast,” she says.
Miller, the Sarasota-based cardiologist, got a text from Sarasota Memorial that Bonnie was ready to give birth. Miller alerted the team at Johns Hopkins All Children’s and hustled to Sarasota Memorial.
At 5:15 a.m., Thompson got a call that the baby was being delivered … in Sarasota. He called Miller and suggested if the baby needed the atrial septostomy, he could fly down to do the procedure rather than wait for Alistair to be transported to St. Petersburg. Time is of the essence when an atrial septostomy is needed because a low blood-oxygen level can be fatal.
Thompson contacted the LifeLine Critical Care Transport team, made the arrangements and received preflight safety instructions.
Alistair, whose middle name is Han in tribute to the Star Wars character, was 10 pounds, 1 ounce at birth.
Miller monitored the delivery, and after birth, Alistair’s blood oxygen level was 50% of what’s normal. She called Thompson and got a list of what he would need in addition to a bag of supplies he would bring from St. Petersburg.
“Some of the things he needed, we don't typically use in the NICU,” says Miller, adding an atrial septostomy never had been performed at Sarasota Memorial. “The team scrambled to find everything all over the hospital. They were in the emergency department. They were in the vascular lab. They were in the cardiology unit. But they got everything that he wanted, and we set everything up.”
Thompson only had been in a helicopter once before. He said the LifeLine helicopter had plenty of room for his 6-foot-5 frame. The flight took only 14 minutes.
With Sarasota Memorial well prepared for Thompson’s arrival, he did the five-minute procedure, which involves creating a small hole in the wall between the left and right atria of the heart about an hour after Alistair’s birth and the pulse oximeter immediately began to chirp his increasing blood oxygen level.
“Dr. Thompson was like a superhero,” Bonnie says. “He’s a super fun guy.”
Thompson, who does about five such procedures a year, praised the support he received from the Sarasota Memorial team: “They were really great.”
After the procedure and a visit with Bonnie, Alistair got his helicopter ride along with Thompson returning to Johns Hopkins All Children’s.
“The transport team, they're my new heroes,” Thompson says. “They were great and it was really a cool experience from start to finish.”
Bonnie needed a couple of days to recover from the delivery, but her adrenalin and desire to get to her son caused that recovery to go “amazingly well.”
Benjamin picked her up and brought her to Johns Hopkins All Children’s.
“The nurses are very knowledgeable,” she says. “They’re so kind and compassionate. I was still recovering, so they were taking care of me and the baby.”
James Quintessenza, M.D., has three decades of experience as a pediatric cardiac surgeon. He repaired Alistair’s transposition of the great arteries on Jan. 16.
“The long-term prognosis for this is excellent,” Miller says. “The children typically go on to have no cardiac restrictions or limitations. They can participate in sports, go to college, get married, do all those things that we wish for our children.”
Miller expects to have follow up visits with Alistair every few months at first but then only every year or two after that.
“I can’t describe how amazing the care was,” Bonnie says. “They are extremely knowledgeable experts but also genuine people who do everything possible to fill you in on all the details without being overwhelming. They care about the whole big picture of our family.”
Although Alistair’s adventure was an extraordinary case, the collaboration and teamwork were no surprise, Miller says.
“When you call our team with an S.O.S. for a sick child, everybody answers the phone and everybody's all in,” she says. “You call Dr. Thompson, and he's ready to go. The transport team answers with ‘whatever you need.’ Sarasota Memorial, NICU, pharmacy … everybody's all in, and that's how you make magic happen for these kids.”