Toledo native Titus Sickles is only 9 weeks old. But he already needs a heart transplant.
“We call him our little fighter,” said his mother, Rena Sickles.
Titus was born with a hole between two ventricles (chambers) of his heart, and his heart muscle is weak. On March 1, Titus was admitted to Seattle Children’s Hospital, where he’ll remain until he receives a donor heart.
“I never thought it would come to that point,” said his father, Andy Sickles, a machinist for a Woodland firm that makes equipment for the forest products industry. “It’s so surreal.”
Over the weekend, doctors at Seattle Children’s started Titus on a new medication to keep him alive until a donor heart becomes available, which doctors say may take about three months. Until then, he must stay in Children’s, though he was out of intensive care within two days of starting the medication. Doctors had expected him to remain in ICU for a week.
A fighting attitude is already a pattern in Titus’ life. Even before he was born on Jan. 8, doctors knew from ultrasound scans that his heart was defective.
In preparation, the family headed to Portland’s Oregon Health & Science University (OHSU) a week before Titus was due. Doctors there had prepared Rena and Andy Sickles for the worst, but Titus was discharged eight days after his birth.
“Every time we saw him, a new tube was off of him,” Rena Sickles said.
Titus went home for a week before he showed symptoms much like those of the cold that had affected his three older brothers. That’s when OHSU doctors found his heart muscle was too weak to survive surgeries needed to repair the hole between his two ventricles. They suggested taking him to the transplant center at Seattle Children’s.
Because of the high chance of rejection, Titus will stay in the hospital for several months after his transplant.
Being away from her three other children is the hardest part of the whole process, Rena Sickles said earlier this week. Her husband said all three, who range in age from 2 to 5, are “coping pretty good” while at home in Toledo. Nevertheless, he said, “they know mom’s gone and Titus is gone.”
He has already taken off work for three weeks to watch Stetson, Sawyer and Abram while his wife is in Seattle with Titus. Every other day, he drives up to Seattle with the three boys to visit.
The couple first learned of Titus’ condition when she was 18 weeks pregnant. At a gender reveal ultrasound, doctors paid particular attention to Titus’ heart. The actual diagnosis came later: hypoplastic left heart syndrome.
Rena Sickles said that she and her husband didn’t have any names in mind initially, but after learning Titus’ gender and diagnosis, they decided that he needed a really strong name. Titus is an old Roman name that may mean “title of honor.” It also appears in the Bible, and Titus’ dad said they understood it to mean “trust in God.”
“It helps us get that reminder to just trust God through the whole thing,” she said. Faith, she added, “has really held us together as a family.”
Rena Sickles posts updates about Titus on her “Team Titus” Facebook page. The amount of support the family has received, both in person and online, has been surprising, she said. “The community has really come together for us,” Andy Sickles said.
He also said that an adult heart transplant usually costs around $2.4 million. Titus is covered under his insurance, and Rena Sickles noted that it will cover quite a bit of the cost. “But I’m sure we’ll see some bills,” she said.
In January, Team Titus supporters organized a silent auction at Toledo High School to raise money for the family’s mounting travel and lodging bills. A friend from church also makes and sells Team Titus T-shirts.
Andy Sickles’ mother in January created a gofundme.com account to benefit Titus, and $4,625 has been donated to date. The family’s $15,000 goal, he said, will cover motel stays and the money lost while he’s out of work.
The family’s commute between Seattle and Toledo will likely continue after Titus’ transplant. “I think I’ll stay bedside,” Sickles said, “but (Andy) will come up. ... So we can be together as a family and I can watch my other kids grow.”
“We’re trying to pace ourselves on funds just because the future is so unpredictable,” she added. Throughout the process, strangers and friends alike have donated and reached out to her.
“People from several different states look up my name on Facebook and say ‘We’re praying for your baby,’ ” she said. “They cheer us on and let us know that there’s a whole support team behind Titus.”