Phoebe’s Heart Story
When Ivan and Jean Vargas were expecting their fourth child, they sensed some uneasiness from the technician during the 18-week ultrasound. When the technician left to get the doctor, Jean, a Sanford Health RN Clinical Manager, said to her husband, “Something is wrong. They never go get the doctor. If they can’t see something they have you come back in a couple of weeks.”
Pediatric Cardiologist Theresa Stamato, MD, confirmed the specifics of the heart defect and monitored it with fetal echocardiograms throughout the pregnancy.
It was devastating news for the Vargases because they lost their first child at 25 weeks.
“I prayed through the whole pregnancy,” Jean said. “I prayed for tenacity in this baby to fight through everything this baby is up against. He or she is going to have to be a spitfire – and I know I am going to regret this in the teen years – but this is what we need, and honestly, we’ve gotten that in her. She never gives up.”
Phoebe was born Nov. 10, 2009, at Sanford Health’s The Birth Place in Sioux Falls.
“It was nice for us to be in the comforts of home,” she said.
Phoebe stayed in the Boekelheide Neonatal Intensive Care Unit for five days before flying with Jean via Sanford jet to Michigan for her first open-heart surgery at 7 days old.
Doctors knew she had a congenital heart defect and later determined it to be a variation of hypoplastic left heart syndrome, a complex and rare defect where the left side of the heart is critically underdeveloped.
In Phoebe’s case, her aorta was normal, but her left ventricle was not. She had her second and third open-heart surgeries at 4 and 18 months old, both in Michigan.
Approximately 130 babies are born at Sanford with congenital heart disease and most must travel out of state for treatment. Sanford Health Foundation began the Pediatric Cardiovascular Surgery Campaign in 2012 so pediatric heart patients can be cared for right here at Sanford Children’s. Chad Rolfs, Director of Development, said generous donors have given $1.4 million so far in the $3 million campaign.
“This special program can only move forward with philanthropic support,” Rohlfs said. “The gifts we have secured to date are being used to purchase specialized equipment and build the program infrastructure moving forward.”
Today, Phoebe is an energetic toddler who started preschool last fall, but her medical journey continues. She takes medication for supraventricular tachycardia, or SVT, a condition that causes the heart to beat abnormally fast. An MRI revealed an arachnoid cyst is in her brain, which her neurologist checks once each year along with the weakness it has caused on her right side. At Sanford Children’s, Phoebe also visits with her pediatric cardiologist and gastroenterologist every six months and pediatric surgery nurse practitioner every three months to check her gastrostomy tube used to help her get enough water, in addition to weekly physical and occupational therapy sessions.
Jean said their family is grateful for the pediatric specialists at Sanford Children’s so Phoebe can receive care close to their home and knows a pediatric cardiovascular surgery program will help eliminate the stress of traveling out of state for other families.
“Growth of this program locally will have an enormous impact on families like ours by reducing travel away from family, home and jobs,” she said. “There is tremendous comfort in being home, and I think that applies to our medical home as well.”
To support the Pediatric Cardiovascular Surgery Campaign, call the Sanford Health Foundation at (605) 328-5700 or visit sanfordhealthfoundation.org.
Posted Date: April 2014