When 10-month-old Story Hill gets a little older, she will certainly have a story to tell.
Young Story was born with a congenital heart defect, one that her parents, Adam and Lauren Hill, knew would require lots of monitoring and three or more surgeries.
What they weren’t expecting was for Story to go into heart failure while on a follow-up visit to her cardiologist at the University of Kentucky.
That was on Friday, May 30.
The Hills were airlifted to Nationwide Children’s Hospital in Columbus, Ohio, where doctors continued to monitor Story’s condition.
When the doctors came in to talk to Lauren and Adam, they learned that their tiny girl’s heart was not squeezing. Her heart function was decreasing.
She was given medication to help her heart constrict.
Doctors said the only option for little Story was a heart transplant.
“Team Story,” which is the Facebook support page, called out for prayers for the little girl whose life was in jeopardy.
On July 3, Story was added to the list for a donor heart and her condition continued to deteriorate.
Six weeks and three days later, the Hills received the bittersweet news that a heart was available for Story.
“I couldn’t stop crying,” said an emotional Lauren. “We were so happy to be getting the heart and we were grieving for the donor family,” Lauren said in a telephone interview from Columbus on Tuesday.
Generally, the parents are given an option on the heart. If it seems to be too high risk, they can decline.
Lauren said that might happen if the donor had gone through a transfusion or had other medical issues.
However, Story’s cardiologist accepted the perfect heart without consultation.
“It was too good of an offer,” said Lauren. “It’s what we had been praying for.”
The news of the heart was delivered to the Hills about noon on Sunday, Aug. 17. By 9 p.m. she was in surgery.
It was a grueling nine-hour surgery where Story’s family waited to hear any news of the procedure.
By 6 a.m. on Monday, Story had her new heart and the surgeon was optimistic.
The first Facebook message following Story’s surgery said, “Story’s new heart is in and beating on its own! They are getting ready to take her off of the bypass machine! Thank you so much for your continued prayers!”
In the days that followed, complications developed, first with bleeding, then she went into cardiac arrest and had to have compressions to keep her going.
“It was very scary last week,” Lauren said. “We didn’t know if she was going to make it.”
Story has been a fighter.
“It’s been a roller coaster of emotions,” Lauren said.
She was having problems with her feeding as well. It was determined that she had a small stroke pre-transplant but doctors were more stumped by the glassy-eyed stare from Story.
Because some of her medications had been backed out, she was having withdrawal symptoms.
“She was struggling trying to get back to normal,” Lauren said, noting that during this time she also developed pancreatitis.
Monday brought another emotion to the young family when Story offered her first smile since the surgery.
“That was great,” Lauren said. “Her heart function looks great now. God has been so good to us.”
Lauren said that once Story starts eating, which she is hopeful will be later this week, she will be moved to the step-down unit.
Things just keeping looking up for Story and her new heart.
Lauren admitted that she was warmed when she was able to embrace her daughter for the first time last weekend.
“I just want to be able to hold her and love on her without having to get permission,” Lauren said.
She said she knew when Story’s breathing tube was removed it was only a matter of time before she would be able to hold her.
“It was very emotional,” she said.
Lauren has been with Story at the Nationwide Children’s Hospital without leaving since the transplant.
She said they have a place at the Ronald McDonald House, but she hasn’t been ready to leave Story’s side.
Lauren will remain in Columbus for the foreseeable future. Adam, who is a mail carrier for the Cynthiana Post Office, has also been able to be there since the surgery.
Once Story gets to the step-down unit, it could be another week before she would be released to the Ronald McDonald House.
Story and her family will have to remain in Columbus at least until Sept. 28, which is when doctors will perform their first biopsy to see if there are any rejection issues.
If all goes well, it’s back to Cynthiana.
Friends from Central Christian Church, Linda Moore and Brittany Dargavel, have scheduled a benefit for Saturday, Sept. 27, for the Hill family.
Proceeds from the carnival-like event will go to help the Hills with bills and expenses.
Anyone interested in sending cards to the Hills while they are in Columbus may do so at:
700 Children’s Drive 804D #29
Columbus, Ohio 43205
“We want to thank God, and all the doctors and nurses, and everyone for all the prayers.”
The Hills have no information about the donor.
Lauren said that after a year, she will be able to write a letter to the family and they will be able to choose whether or not they want to accept it.
“We are so thankful to the donor family that’s for sure,” said the humbled mother.
Story’s story won’t end here. In two months she will celebrate her first birthday.
It may not be a birthday wish, but it’s certainly one that the Hills know works.
“Just keep praying.”