Sisters get matching heart devices
Four years apart, but months apart from needing left ventricular devices for San Antonio teens.
Just before sisters Heidi and Harper Gaffney drifted off to sleep, the music of Harry Styles, Niall Horan, Olivia Rodrigo and Taylor Swift filled the operating room at Dell Children’s Medical Center.
The music coming from the girls’ phones in separate operations April 24 and July 2 was planned out as part of the details of the surgeries. Each girl created her own playlist with her favorites.
The Gaffney sisters, who live in San Antonio, had never broken a bone or had a surgery, but they were diagnosed as infants with a genetic condition that caused the muscle of the heart to thicken, making it harder for the heart to pump.
A heart catheterization this year revealed that Harper, 13, and Heidi, 17, had hearts that were in danger of going into an irregular heartbeat and failing.
Without doing anything, they would “eventually perish,” said Dr. Erin Gottlieb, the chief of pediatric cardiac anesthesiology at the Texas Center for Pediatric and Congenital Heart Disease, a partnership between Dell Children’s and UT Health Austin, the clinical arm of Dell Medical School at the University of Texas. “They would go into cardiac arrest and be unresuscitable.”
The Gaffney sisters each needed a left ventricular assist device to do the work of pumping the blood to the heart, with the hope that it would improve their health until they could qualify for heart transplants.
Continuing to grow
In its sixth year, the congenital heart program continues to expand and attract patients from throughout Texas, across the country and even around the world. Within a year, the center expects to add two more surgeons and two to three anesthesiologists, said Dr. Charles Fraser, head of the center. A new heart catherization lab will open this fall.
In August, seven patients were living at Dell Children’s while waiting for a heart transplant because they were too sick to be at home. Both cardiac critical care units were full, with more cardiac patients in the neonatal intensive care unit and more in less intensive units.
“The need is intense,” he said.
Fraser and his team are taking on some of the most complicated cases and are seeing good outcomes. In the past four years, Dell Children’s has had a 1.92% observed mortality rate, which is 35% lower than what would be expected, according to the Society of Thoracic Surgeons’ database. Only about 10% of congenital heart centers achieve that rate.
“This children’s hospital is becoming what the community deserves,” Fraser said.
Learn more: In first 5 years of heart program, Dell Children’s has surprised even itself. Where it’s headed.
Understanding the diagnosis
Heidi was about 3 months old when what was thought to be an ear infection that wouldn’t clear up was discovered to be the same genetic heart condition her mother, Ashley Gaffney, has.
Four years later, Gaffney had quadruplets, two girls and two boys, born prematurely. While in the NICU, the babies were checked for the condition. Harper, the youngest, had it, as well as her two brothers, but not her quadruplet sister. The two boys have not needed treatment.
Ashley Gaffney has been able to control her condition with medication.
“Up until pretty recently, that was what we thought would be the path for the girls,” Gaffney said of Heidi and Harper.
This year, in looking for a new cardiac team, the family came from San Antonio to meet with the team at Dell Children’s and to get new heart catheterizations to check their hearts.
Even though the girls looked normal, their hearts were “shockingly terrible,” Fraser said. Instead of beating, “their hearts were just rocking,” he said.
Learn more: 12-year-old pioneers heart pump device at Dell Children’s after surviving two hours of CPR
Heading into the operating room
Because of the condition of the girls’ hearts, “these were two really high-risk inductions,” Gottlieb said.
Typically, a person can be anesthetized in 30 seconds, but these girls would take 15 minutes. Because of their hearts not having a normal heartbeat and normal blood circulation, they needed to have the anesthetizing medication given slowly to avoid being a shock to their bodies.
“If you get impatient, it’s a huge problem,” Gottlieb said. The blood pressure could drop, and the heart could stop or get into an abnormal rhythm. “You’re not going to get them back.”
There is “zero margin for error,” Fraser said.
Gottlieb and her team had to keep the girls calm from the hospital room to the operating room and until they were asleep.
As the team moved the girls into the hug zone — that space where families have to say goodbye to their children before the children are taken to the operating room — “it was a lot of tearful ‘see you laters’ not ‘goodbyes,’ ” Gottlieb said, even though there is that fear.
Fraser said the hug zone is way too emotional for him, and he avoids it.
“I don’t like all that,” he said. “I can’t take thinking of them on the bed,” he said of the child he’s about to operate on. Instead, he focuses on the task at hand and the device he’s implanting or the heart he’s repairing.
Once in the operating room, everything was planned, Gottlieb said, including how the staff maintained calm and stayed positive, especially as Gottlieb and her team were anesthetizing the girls.
At one point, Heidi noted that she wasn’t falling asleep. Gottlieb reassured her that she was doing great and said, “Let’s listen to another Taylor Swift song.”
Gottlieb hates any noise in her operating room because she is looking for subtle changes in the sound of the heart on the monitors.
“Everyone in the room should be tuned in to the cadence and tones,” she said.
In many cases, though, Gottlieb knows that the patients need the music. A mother herself, she’s even sung songs with children to keep them calm.
With both girls, Fraser sat beside them and held their hand. It’s a comfort for the patients, but he’s actually feeling the pulse and feeling for those subtle changes.
As soon as the girls closed their eyes and were asleep, the music was turned off, the room got quieter and the team focused on the operation at hand.
Returning to life
The girls do feel different with the left ventricular assist device.
“I feel like we just feel more energized,” Harper said.
Heidi confirmed: “I have seen a difference in Harper. Oh, my gosh.”
“Spunky?” Harper asked.
“Yes, that’s the word,” Heidi said.
Back in San Antonio, the girls are able to do almost anything with their LVADs except get them wet. Because the girls are on blood thinners to reduce clots inside the LVAD as it is circulating the blood, Harper did have to give up skateboarding for now.
The girls have adjusted well to the responsibility of caring for their LVADs.
They both carry pink fanny packs, which contain two batteries that run the device. Those batteries are connected to the LVAD by a tube that runs from the batteries to their abdomen and then internally to the LVAD in their chest. At night, they plug in the batteries to be recharged.
The girls, who have very different personalities, now have this in common.
“We did it together,” Harper said.
“Only Harper gets it,” Heidi said of their shared experience of having an LVAD surgery and the recovery process, including any lingering pain from having their chests cracked open. “But then she tells me, ‘You’re fine.’ So she’s not really helpful.”
Heidi, who said she would cry at every appointment just thinking about heart surgery, is now considering becoming a pediatric nurse. Harper still wants to be a pastry chef.
“The girls have done amazing,” grandmother Elisabeth Green said. “The girls are very excited about the prospect of getting a transplant and moving forward.”
Harper is in the process of getting listed for that transplant. Heidi has to wait three months after the LVAD surgery to be considered.
Until then, they have many things to look forward to this fall. They, their other sister and their parents are going to see Taylor Swift in New Orleans in October.
“We’ve scheduled a lot of these things and procedures around Taylor Swift,” Gaffney said with a laugh.
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Publish date : 2024-09-03 00:01:00
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