Every weekend for the past seven months, Delilah Edwards’ parents have driven from their home in Moline near the Iowa border to Chicago to see their daughter.
It is the departure that hurts the most.
“I don’t even know how I handle this; I have to do it, ”says Samantha Davidson, mother of the 3-year-old.
She and her husband Ryan Edwards had to do it because they have two other dependent children at home and because Delilah was, until last week, a patient at the Ann & Robert H Children’s Hospital. Lurie waiting for a heart transplant.
On Thursday, Delilah’s family will be especially grateful to a team of nurses who have learned to soothe the little girl when it’s time each week for her parents to say goodbye to her and because she finally has a new heart.
This week, Delilah and her family – along with about 70 other families – will celebrate Thanksgiving at the downtown Ronald McDonald House, free accommodation for families so they can be close to children undergoing medical treatment. Some stay a few days, others a year or more.
Delilah’s family plan to stay there for the next four to six weeks so that they can accompany her to Lurie several times a week for exams.
Delilah was born with an underdeveloped left heart. She had nine surgeries in all, in part because some of them didn’t work.
“She really doesn’t know anything other than that. It is therefore its normality. I think it affects us a lot more than it actually affects it, ”Davidson said.
Like when her parents have to leave after spending the weekend with their daughter.
“When we leave, we say to ourselves, ‘Oh, we’ll be back’. But it’s not like we’ll be back in an hour or a few days, ”Davidson said. “The nurses do a good job of entertaining her for us. “
Sometimes Davidson breaks down in tears, especially if she and her husband haven’t been able to spend as much time with their daughter as they would have liked.
Doctors told Delilah’s parents in February that a new heart was the little girl’s best chance for long-term survival.
“Some children, we can continue to do surgeries. The biggest problem for Delilah was not only having an abnormally developed heart, but also having developed heart failure, ”said Dr. Phil Thrush, medical director of Lurie’s Pediatric Heart Failure and Transplant Program.
The hospital performs an average of 25 to 30 heart transplants per year, making it one of the busiest in the country, Thrush said.
Delilah went to the hospital in March, then last month the family learned that a heart was available.
Her parents tried the easiest way to explain to Delilah what was going to happen.
“We were like, ‘You’re going to have a new heart,’ and she said, ‘Yeah,'” Davidson said.
The Oct. 23 transplant lasted around 12 hours, which is not uncommon when surgeons first have to cut through extensive scar tissue, Thrush said.
Grive said the first six months after surgery are the most difficult. If she is over a year old, “I would expect her to have this heart probably for over 20 years,” he said.
This week on the eve of Thanksgiving, Delilah was spinning on a big pink and white toy in the Ronald McDonald playroom, closely followed by her mother.
“Before, its color was really off. She was very pale – a grayish blue color most of the time. And now she is very pink. I have never seen her cheeks have so much color, ”said her mother.
The family has no big plans for Thursday other than spending the day together.
“I’m just happy to be able to spend time with her,” Davidson said.