Lucy Moody, born 2 weeks ago to Templeton couple Rebecca and Larry Moody, is already a survivor.
The newborn has a complex heart defect that essentially limits her to using only half of her heart. She underwent open-heart surgery at just 8 days old.
She will endure two more open-heart surgeries by the time she turns 3.
Lucy has five different heart defects, with most of the symptoms mirroring a rare congenital heart condition known as hypoplastic right heart syndrome.
Lucy’s case has its own intricacies because of the other heart defects, but she will live the rest of her life using just the left side of her heart.
Dr. Jay Pruetz, a pediatric cardiologist at Children’s Hospital Los Angeles, operated on Lucy to install a shunt to help with the limited blood flow she had going to her lungs.
Her small heart, the size of a strawberry, didn’t develop enough to function as a normal four-chamber heart. And in her case, a double outlet right ventricle defect has resulted in the pulmonary artery and the aorta — the heart’s two major arteries — coming from her right ventricle. Typically, one would be on each side of the heart.
“We are working with what she was born with,” Pruetz said. “It is the anatomy we have.”
The initial surgery was successful, and this week for the first time, Lucy gets to go home from the Los Angeles hospital.
She will get to meet her 8-year-old brother, Wyatt, and her 7-month-old adopted sister, Stella, for the first time.
For now, she gets to rest and grow strong enough for the next surgery, which will be when she turns 6 months old. The final surgery won’t happen until she is 3 years old.
Rebecca Moody learned of her daughter’s heart condition during a routine ultrasound when she was only 20 weeks pregnant.
“It was supposed to be exciting, and instead they found a small hole in her heart,” Moody said. “They sent us to the Children’s Hospital to get an echocardiogram, and that is how we found out she basically had half a heart. I was devastated.”
The family’s life changed drastically.
Moody had to travel to Los Angeles every four weeks to meet with doctors to make sure that Lucy was growing properly. She was also told she would have to give birth there because a team of specialists would be needed to save the baby’s life.
Moody quit her job knowing that a long road lay ahead.
She and her husband had just adopted Stella because they were told they couldn’t naturally conceive another child. Moody’s mom took two months off of work to help take care of the children.
In addition, Jack’s Helping Hand, a local nonprofit that assists families with special needs, helped the family pay for the extra cost of traveling to Los Angeles on a regular basis.
Lucy was born Jan. 30, two weeks earlier than anticipated, weighing 6 pounds.
“She was a very tiny 6-pound baby,” Moody said. “She was wearing preemie clothes and swimming in them.”
Within moments of being born, she was whisked away to the neonatal intensive care unit.
“I didn’t know when I would get to see her,” Moody said.
Moody has been staying at the Ronald McDonald House to be close to Lucy as she recovers.
“She is a very mellow baby,” Moody said. “She is passive and easy to console. She barely cries. She doesn’t seem to have a care in the world.”
Moody, however, said she will cry herself to sleep some nights.
“You have to stay strong so that they can stay strong,” said Moody, who has learned to rely on a network of moms who also have babies being treated at the hospital for heart defects.
Prognosis is good
Despite the multiple, complex issues facing baby Lucy, Pruetz said she has a good life ahead of her.
“She has come through with flying colors,” Pruetz said. “A lot of patients with similar heart defects will live into adulthood and do just fine.”
Pruetz said that learning of the heart defects prenatally contributed to the positive outcome.
It allowed the family to prepare for what was ahead and to coordinate her birth at a hospital equipped to care for her immediately.
Had she been born in San Luis Obispo County, she would have had to be flown to a hospital with staff trained for the specialized care almost immediately, he said.
It’s difficult to gauge the average lifespan of patients undergoing the treatment, Pruetz said, noting that the surgery has been around for only about 50 years.
However, if Lucy’s remaining surgeries go well, she could live her entire life without the need for a heart transplant.
“We just hope and pray that the three surgeries go great and that her heart will function as best as it can,” Moody said.
“She won’t be an athlete, but she will essentially continue to live on half a heart,” she said.
To follow Lucy Moody’s progress, visit the Team Lucy Facebook page.