Ethan Graham was born at full-term and looked so perfect. His parents, Ryan and Ashley Graham, could not wait to take him home to see his siblings. A couple weeks later, Ethan was not able to have any bowel movements, so his parents took him to the doctor. Ethan’s doctors knew they weren’t able to give the answers the Graham family was looking for, so they sent Ethan from Kentucky to Vanderbilt Children’s Hospital in Nashville. Vanderbilt could not give any answers as to what was going on with Ethan, so they sent him to Kosair Children’s Hospital in Louisville, Kentucky. While at Kosair, Ryan and Ashley found out Ethan had a bleeding disorder, so they sent Ethan and his parents to Nationwide Children’s Hospital. The family had a nurse refer them to the Columbus Ronald McDonald House, and they arrived right before Christmas of 2013.
Since Ethan has been treated at Nationwide Children’s Hospital, he has undergone three biopsies and two scopes. He has all of the symptoms for Cystic Fibrosis, but this little boy has not tested positive for this disease, so his diagnosis is still unknown. This has resulted in a lot of travel from the Graham family’s home in Kentucky to the Columbus Ronald McDonald House. “We’ve met a lot of families over at Nationwide Children’s Hospital, only to find out the family we have been talking to is also staying at the Columbus Ronald McDonald House. We met Story Hill and her parents (an amazing little girl whose story we told in 2014), and learned just how similar our children’s lives were—from living in Kentucky, to having the scary experience of having our children lifeflighted from Kentucky to Nationwide Children’s Hospital—it has been wonderful to know someone who has common ground that can relate to our family’s story.”
Ashley said she is continually blown away by the amenities at the Columbus Ronald McDonald House. “We’ve taken so many pictures of Ethan in the library, so it has been fun to see him grow and change. The movie theatre has also been a lifesaver, because Ethan wants to stay up while his dad may want to sleep, so Ethan and I make our way to watch movies there late at night. I was here before, during, and after the expansion. I was here last Friday when they opened the NHL All-Star Tree House—what an amazing space! We love the Columbus Ronald McDonald House because of the volunteers and the sense of community. From listening to a little girl sing “Let It Go” from Frozen during dinner and applauding her for her performance, to bonding with other families in all of the beautiful common spaces, there is no place like the Ronald McDonald House. We are truly grateful for this place!”
For almost a year old, this little girl looks healthy. She is full of giggles and smiles—however, there is more than meets the eye. Story’s story is a wonderful reminder of hope. Lauren, Story’s mother, was 20 weeks pregnant when she went in for a regular checkup, where the doctor became concerned about Story’s heart. Lauren and her husband, Adam, were sent to a high-risk fetal doctor, where they learned heavy news—their baby girl had a major heart defect.
The Hill family is from Kentucky, and their doctor knew their home hospital would not be able to handle the magnitude of Story’s heart defect, so Lauren and Adam were referred to Nationwide Children’s Hospital. The couple did not know where they would stay during Story’s surgeries and treatments, so they were referred to the Columbus Ronald McDonald House, and knew this place would serve as their home-away-from-home during a scary and unknown time in their lives.
On October 23, 2013, Lauren made the trip to Columbus. Because of the magnitude of Story’s heart defect, Lauren would be giving birth at Riverside Methodist Hospital, which is known for their fantastic labor and delivery services. On October 28, 2013, Story was born and four hours after her birth, she was transferred to Nationwide Children’s Hospital. On November 1st at a mere five days old, Story had her first of three heart procedures and her heart was the size of a strawberry. She was in the hospital for 3 ½ weeks. At five months old, Story had her second surgery, which was more intensive and invasive. The little girl had a blood transfusion and her heart was stopped while she was put on bypass.
Earlier this year, Story was not taking her feedings, but Lauren and Adam were convinced it was because she was teething. Her mother took Story to a scheduled appointment, where the doctor gave devastating news: Story was having heart failure. She was immediately airlifted from Kentucky to Nationwide Children’s Hospital and admitted to the Cardiac Intensive Care Unit. On July 3, 2014, Adam and Lauren made the decision to put Story on the transplant list.
Every morning, Lauren would wake up and say to herself, “Today could be the day that my daughter gets a new heart!” Even though there were dark days, Lauren and Adam never gave up hope. On August 17th, Lauren didn’t wake up thinking about Story receiving a new heart. Adam was in Kentucky keeping insurance going when Story’s doctor gave some unexpected news: he was stopping Story’s feeds and Lauren needed to call Adam, because they had a heart for Story! “We experienced so many emotions that day—we grieved for the family that had lost their child, fear for the major surgery our daughter would endure, and elated there was a match for our sweet girl.”
The surgery went well, and Story has had some bumps in the road, but she has been staying at the Columbus Ronald McDonald House during her weekly appointments. “The Columbus Ronald McDonald House is our home-away-from-home. The volunteers and staff are our second family. We love having our suite here at the House because we can cook and spend time together as a complete family and keep our life feeling normal in abnormal circumstances. We love what a homey atmosphere this place is—the smells and sounds are familiar to our own home. With the stress of being three hours away from our home, we do not know what we would have done without RMHC of Central Ohio. This place is a gift, just like Story’s heart is a gift to us.”
Update: Today is a wonderful day to celebrate with the Hill family. After being in Columbus for more than four months, Story is heading home today! We are so glad we could provide a home-away-from-home for this young family during a season of their lives.