By Maureen Gilmer, IU Health senior journalist, email@example.com
Cami Elsasser knew the baby was coming.
While on the phone with the birthing center down the street from her Fort Wayne home, her water broke in the tiny half-bath off the kitchen. She yelled for her husband, Eric, when she felt the baby’s head poke through.
It was all adrenaline at that point, Eric said later.
“The head was out, it was pretty quick – two pushes and I caught her,” he said. “The harder part was figuring out the logistics after she was born.”
It happened so fast they didn’t have time to grab any extra towels or sheets. He handed the baby girl to his wife, while they were on speaker phone with the midwife.
When Cami stood up, she felt her placenta starting to fall, so while holding her daughter in one arm, she and her husband lunged to grab the placenta before it fell to the floor. Eric put it in the first thing he could grab – a Target bag – and looped it around Cami’s wrist.
From the first contraction at 12:47 a.m. to birth at 2:19 a.m., just 92 minutes had elapsed. But their whole world was about to change.
TEN FINGERS, TEN TOES
Scarlett Rose Elsasser was, by all appearances, perfect – if not a little impatient to enter the world. She weighed 8 pounds, 5 ounces at birth in late November, her color was good, and her delivery was smooth, albeit unorthodox. She is Cami and Eric’s second child, so they knew labor might progress a little faster, but they figured they would have at least a few hours to get ready.
Scarlett had other plans.
After making sure his wife and baby were OK, Eric gathered up their 4-year-old, wrapped Cami in a robe, bundled up Scarlett and drove to the birthing center less than a mile away, where mom and baby were declared healthy and sent home.
They returned 24 hours later for another well check. All good.
Cami took Scarlett to the family’s primary care provider at three days old, two weeks, then again at one month. It was at that one-month visit – just days before Christmas – that things rapidly changed.
The physician, a close friend of Cami and Eric’s, noticed an odd heart noise. It wasn’t a murmur, but it didn’t sound quite right. She told the Elsassers that she would feel better if they took Scarlett in to see a pediatric cardiologist in her practice.
“It was hard for her to tell us right before Christmas,” Cami said. “The last thing she wants to tell anybody is that there might be something wrong with your baby’s heart.”
But it turned out to be a precious gift.
A week later, Dec. 29, they returned to see the cardiologist.
“You could tell they didn’t expect it to be anything huge,” Cami said. “They started with a standard EKG, and the technician delivered it to the cardiologist.”
But within minutes, the technician returned and said she needed to run it again.
When those results mirrored the previous ones, the cardiologist came in and told the couple their daughter’s heart tests were abnormal and they needed to do an echocardiogram, an ultrasound of the heart.
“As soon as they started, they stopped it because Scarlett became fussy and the cardiologist knew what the problem was,” Cami said.
EMERGENCY TRIP TO RILEY
From there, things escalated. The Fort Wayne cardiologist got in touch with Riley Hospital for Children in Indianapolis, and arrangements were made to fly 5-week-old Scarlett to Riley via IU Health LifeLine.
It was all too surreal for Cami and Eric, who could only see a perfectly healthy baby. Timing was critical. Scarlett was alive and well at the time, but she needed surgery as soon as possible, they learned.
“All of the sudden, we’re in the ER and she’s getting in a helicopter. Her heart was not healthy, but we wouldn’t have known that without the heart monitors, which kept alarming when she cried,” Cami said.
Her parents followed by car, and by the time the couple arrived at the hospital a little over two hours later, the Riley team had confirmed the Fort Wayne cardiologist’s suspicion and diagnosed her with a rare congenital heart defect called ALCAPA (anomalous left coronary artery from the pulmonary artery).
This is where Riley cardiothoracic surgeon Dr. Mark Turrentine and his team entered the picture.
Baby Scarlett is lucky, he said this week, five weeks after he performed open-heart surgery on her to reroute her left coronary artery from the pulmonary artery back to the aorta to establish a good flow of oxygenated blood to both sides of her heart.
Riley sees three to four cases of ALCAPA a year, so it’s not unique, but it is rare. One in 300,000 babies are born with this heart defect.
RILEY WAS READY
What is unique about Scarlett is that her problem was diagnosed several weeks earlier than most children born with the disease, leading to earlier intervention and less long-term damage to her heart, Dr. Turrentine said. Her prognosis for a fairly normal life is good, he believes.
“That curiosity by their primary care physician – saying ‘I’m hearing something not quite right’ – not everybody would pick up on that,” he said. “That led to being sent to the local cardiologist, who has a connection with our Riley cardiologists, and there was a rapid transfer, rapid diagnosis and a fairly rapid repair.”
He was so impressed that he wrote a note to the Fort Wayne physician, Dr. Anna Menze, grateful for her diligence and for the network of care Riley counts on throughout Indiana.
“Here’s a story that speaks to the quality of care out in the communities in Indiana,” Dr. Turrentine said. “It speaks to what can happen with the linkage to Riley; it speaks to how we’ve created a highly integrated heart center that functions efficiently and with high quality, and this just worked out the way you would want it to work out. It’s just a great story for this family all around.”
For their part, Cami and Eric couldn’t be more grateful to everyone involved in their daughter’s care, including the doctors and nurses at Riley.
“Our overwhelming feeling is just absolute gratitude for the treatment we received,” Eric said. “There’s not a single thing I could complain about.”
It’s the nurses that Cami will always remember. In fact, she wrote notes to each of them before leaving Riley on Jan. 6, just one week after Scarlett’s surgery.
“The nurses are beyond incredible at Riley,” she said. “They focus on the mental health of the parents too, and that’s huge. They were so kind to Scarlett, and that’s what means the world to you as a parent.”
She’ll never forget the night before surgery when it was so important to keep Scarlett calm to avoid any more damage to her tiny heart. Crying would set off her alarms, sending a panic through her parents.
“That whole night we held her and prayed she didn’t cry,” Cami said. “Every time she fussed a little bit all the alarms would go off and it looked like she was having a heart attack. It was terrifying.”
But Cami and Eric (and Scarlett) had a guardian angel that night named Julia Doyle, a nurse who usually works on the step-down unit but was pulled over to the CVICU that night.
“She sat with me and helped me through it,” Cami said. “She kept us calm. We were her only patient that night, and I can’t even tell you how much she meant to me. Each nurse meant so much. We had the perfect nurse at the perfect time. They all mean so much. They get you through the really hard times.”
Those nurses, the cardiologists, the Heart Center team, the surgeons – all contribute to a top-ranked pediatric cardiology program, a fact that Dr. Turrentine believes we don’t celebrate often enough.
“We’re very understated in this state, but every now and then, you have to remind people what we have here,” the surgeon said.
Of the 120 programs that contribute their outcomes data to the Society of Thoracic Surgeons congenital database, Riley is one of fewer than 10 with the highest quality rating (three stars) from the STS. Last year, the cardiology and heart surgery program at Riley was ranked fifth in the nation by U.S. News & World Report.
The Elsassers knew none of this when their baby was born, but all of it came into play to save her.
From a well-baby visit to a life-threatening emergency that might have gone undiagnosed for another month or two if not for a physician who had a nagging feeling that something wasn’t right.
The infrastructure was in place to connect with the Riley cardiology group, get emergency transport, be admitted into the congenital heart center at Riley and be in the operating room the next day.
Riley has built one of the few truly integrated, comprehensive, congenital heart centers in the country, Dr. Turrentine said.
“There are few that match up to what we’ve developed and designed, but we’ve also built this linkage to the communities throughout the state so that our cardiologists can read the echos and have a line of communication and a transport system that is excellent,” he said.
“We don’t ever want to brag about ourselves and what we have, but on the other hand, you hate to have families in the state feel like they have to go out of state to get the highest quality of care because they don’t know what’s available here.”
One week after her surgery, Scarlett was back home in Fort Wayne with her parents and big sister, Evelyn. At her one-month post-op appointment last week, doctors said her left ventricle ejection fraction is now considered normal.
“This is so incredibly exciting for our family,” Cami said. “Her heart is still healing, and she has mild mitral valve regurgitation, but things are going in the right direction. We are so grateful for the incredible healing that has occurred.”
So after a surprise delivery in the bathroom followed by open-heart surgery, Cami and Eric hope Scarlett is finished with the drama, at least for a while.
“We are hoping for calm now.”
Photos submitted and by Legacy Portraits by Kayte