Traverse City — Five-month-old Lillian Bloss of Blair Township has something in common with Jimmy Kimmel’s 8-month-old son, Billy, and Olympic snowboarder Shawn White.
All three were born with a congenital condition known as Tetralogy of Fallot (TOF), a set of heart defects that hinders the flow of oxygenated blood to the rest of the body.
Lillian, the daughter of Russell Bloss and Theresa Bloss, had open heart surgery Oct. 31 to correct the defect. Kimmel’s son, who has TOF with pulmonary atresia, had open-heart surgery just days after he was born and again in early December.
Lillian will require another surgery, probably when she becomes a teenager, though it could be as soon as age 3, Theresa Bloss said.
TOF occurs in about five out of every 10,000 babies. Kimmel, the host of ABC’s “Jimmy Kimmel Live,” brought awareness of the condition to the forefront after Billy’s diagnosis. He has also used his son’s condition to advocate for health insurance for all children, especially those whose parents can’t afford it.
Lillian was born in early July at Munson Medical Center with no sign she had a heart defect.
“She was born perfect,” Theresa Bloss said. “She was beautiful and amazing and strong.”
The first inkling that something was wrong was when a night nurse listened to Lillian’s chest and thought she heard a murmur. Lillian’s pediatrician also heard the murmur and sent Lillian for an echocardiogram, assuring Theresa Bloss that murmurs are very common.
“That was a little scary, but you start Googling it and it is a common thing,” said Bloss, a behavior technician at Autism Centers of Michigan in Traverse City.
When the results of the test came back, Bloss was told her daughter has TOF and would need surgery before 6 months of age. She was sent home with her parents, who were told not to let her cry, which can overwork the heart.
Theresa Bloss did a lot of online research after learning of her daughter’s condition, even though people warned her that might not be the best thing to do.
“There’s a lot of really sad and really scary stories, but those are not necessarily the norm,” she said.
When it came time for Lillian’s surgery, Theresa Bloss watched a YouTube video of a baby having the procedure done.
“For me, just knowing what they were going to be doing to my baby … that helped, so I wasn’t just sitting in the waiting room wondering,” she said.
After her surgery, done at C.S. Mott Children’s Hospital in Ann Arbor, Lillian was on a ventilator, had three IVs, two chest tubes and a urinary catheter.
But after just eight days, Lillian came home, tube-free, and is developing normally, Theresa Bloss said. As she grows up, Lillian likely won’t be an endurance runner, but will be able to participate in sports.
“She will be self-limiting,” Bloss said. “Her body will tell her, ‘I can’t handle this, I can’t do this.’ ”
Lillian’s brother, 4-year-old Oliver, adores her. Bloss said she and Russell Bloss were nervous about bringing Lillian home because Oliver is used to being an only child. They weren’t sure how he would act.
“But he’s just stepped right up to the plate and is just the best big brother ever,” Theresa Bloss said.
Bloss said having a child with a heart defect has changed her. She is now a germophobe and is more cautious about getting excited about things.
“I don’t take anything for granted,” she said.