The first 32 weeks of Theresa’s pregnancy had gone according to plan, with no indications of future problems. She and her husband, Daniel, were excited to meet their daughter in another eight weeks. Their daughter wasn’t willing to wait that long.
Eden was born May 19, 2012 in Albuquerque, New Mexico, but her time there would be short. A day after her birth, the doctors diagnosed her with duodenal atresia after discovering what appeared to be an intestinal obstruction. Eden was referred to the Intestinal Rehabilitation Program at Nebraska Medicine in Omaha, almost 900 miles from home.
That meant the three of them needed a place to stay while Eden received care. A place to escape from the stresses of the hospital, and to interact with other families in similar circumstances. A place with all the essentials of home, so the only thing the family needed to focus on was Eden’s health.
For the next several months, Ronald McDonald House Charities in Omaha was that place.
In December of that year, Eden was undergoing a surgery to clear another obstruction, and hopefully to allow the doctors to reconnect her intestines. Unfortunately, Theresa and Daniel soon learned that their daughter’s small intestine was dying, and had to be removed. A transplant was inevitable.
Daniel recalls being told that “she needed a transplant, or she was going to die.”
Theresa remembers being overwhelmed with emotion. “We were devastated. We felt hopeless.”
After spending seven months back home, Eden was placed on the transplant list. Three months later, her doctor in Omaha called with news. A donor was available.
In October of 2013, Eden received a new liver, a new small bowel, and a new pancreas. More than that, Eden received new hope.
Her transplant didn’t end with the surgery, however. In the months following the procedure, Eden and her family had to stay in Omaha, to ensure her doctors would be nearby. This meant even more time spent away from home. Thankfully, RMHC in Omaha was there to provide a second home.
“This has been a life saver. This is our home away from home,” Daniel says. Without the Ronald McDonald House, Eden’s family would have needed to look into long-term housing options, because of the length of her stays in Omaha.
He continues, “To think about paying not only for a mortgage back home, but a rent on top of that, it’s monumental. On top of your copays for medication – and Eden’s on so many. We were sinking pretty hard for a while financially, and the Ronald McDonald House helped a ton with that, relieving some of the pressure, and allowing us to concentrate on her and her health, and giving her the care that she needed. Supporting us and our family while we go through this means a lot. It’s gotten us through some very hard times… times that we’ve had less than nothing.”
Those hard times included months-long hospital stays for Eden, rare infections, and even a bout with a transplant-related cancer known as Post-Transplant Lymphoproliferative Disease (PTLD). She’s been on the brink of death on multiple occasions, but she’s never stopped fighting, and neither has her family.
Because Eden’s condition will continue to require the care of her team of doctors, her parents have decided to move away from their family in New Mexico, and relocate to Omaha. It wasn’t an easy decision, and the process hasn’t always been comfortable, but it’s what was needed to take care of Eden, and to keep the family together throughout their journey.
Today, Eden is doing quite well. She’s growing and acting like any other four-year-old. She loves playing with her friends at the Ronald McDonald House. And while some uncertainty awaits, the family will continue to attack each challenge head-on.
As Theresa says, “we don’t know what the future holds, but we have hope of a future.”