Yakima parents Tygh and Aimee Lybbert laugh when they tell the story of their 8-year-old daughter, Izabella, who once took her 9-month-old brother Christian in for show-and-tell at school.
Izabella told her classmates matter-of-factly that her little brother’s heart would never be fixed. “We do everything we can do to get more time with him,” Izabella said.
Christian was born with multiple heart and internal organ defects which are part of a rare syndrome called heterotaxy. His heart is on the right side of his chest, and he was born with a single ventricle.
But the Lybberts weren’t aware that anything was wrong with Christian when he was born. Although Christian’s particular syndrome is rare, congenital heart defects are fairly common — in fact, according to the Centers for Disease Control, they are among the most common congenital defects, affecting one child in every 555 births.
Aimee says she never had a reason to suspect any problems before Christian was born. She had an easy pregnancy and delivery, and Christian scored well on his Apgar tests soon after birth. But when he was two weeks old, what was supposed to be a routine well-baby checkup turned into a nightmarish scene — Christian had to be intubated and flown to Seattle Children’s Hospital for emergency open-heart surgery.
“He was in heart failure,” Aimee said.
Although many babies with heart abnormalities are caught on ultrasounds prior to delivery, some are not. Even babies with severe heart problems like Christian’s can appear in good health after birth thanks to the energy the maternal blood supply lends them.
That’s why there has been a nationwide push to introduce pulse oximetry screening for infants. According to Mary Hart, director of Maternal Health Services at Yakima Valley Memorial Hospital, the American Academy of Pediatrics decided to recommend the screening for all babies two years ago. Starting this March, all babies born at Memorial will be screened.
Since Yakima doesn’t have a pediatric cardiologist, Hart said that the hospital was challenged to find a way to locally diagnose babies who don’t pass the initial screening test. “While we have been working to implement this testing for several months, we also believe we have an ethical responsibility to make necessary follow-up testing and analysis available to newborns who fail the pulse ox test,” Hart said. She noted that the staff didn’t want to send scared parents to Seattle for an echocardiogram only to find out that their newborn was fine, so they have arranged for remote readings of infant echocardiograms to be performed by pediatric cardiologists at Seattle Children’s Hospital.
Given the incidence of congenital heart defects, Hart estimated that the screening could catch about five babies with congenital heart problems born at Memorial each year. The pulse oximetry test (commonly called a “pulse-ox” test) can detect up to seven heart abnormalities, and it’s noninvasive and painless. However, it must be performed at least 20 hours after birth, Hart said, which may affect healthy newborn discharge timing for some families.
To perform the test, nursing staff will wrap a strap around an infant’s wrist and ankle that allows them to check the oxygen level in blood flowing to the heart and from the heart. If an infant scores low on the test, repeat testing will be performed before an echocardiogram is ordered. It’s the same test performed on older children and adults with a plastic finger-meter, Hart said.
Today, Christian Lybbert lives to horse around with his brother and two sisters, and although he’s a little small for his age, he’s met all his developmental milestones on time. Aimee doesn’t take that success for granted, though. She looks at the photos they took of Christian after they brought him home — noting his blue feet and hands — and said it’s terrifying to know how close they were to losing him.
The Lybberts belong to a close-knit support group of Northwest parents whose kids were born with similar heart defects (all were treated at Seattle Children’s Hospital). Aimee noted that there were about 12 babies with what she calls “special hearts” in her group who were all born at about the same time. Four of those babies have died over the course of 10 months … a grim statistic that makes Christian’s progress even more staggering. He’s had two open-heart surgeries so far (he’ll have a third, a Fontan procedure, to help compensate for the lack of a ventricle, between the ages of 3 and 5). He visits several pediatric specialists on a regular basis, and Aimee says that he’s been doing surprisingly well since his second surgery.
Although the Lybberts say their lives have been turned upside down since Christian’s arrival, they are both grateful to have received so much support. “This community has done so much for us,” Aimee said. “We just hope we raise awareness of this so people know where to go for help and what to look for.”
You can follow Christian’s story on Christian’s Solidiers, a Facebook page that Aimee maintains.