Friends of EKF: A Mother’s Day Wish
Julie Howard-Snyder has only one wish for Mother’s Day. “My wish is to keep my son as healthy as I can. My best Mother’s day wish has already come through because Matthew is home with me now.” Matthew Eilers has had an extremely difficult 15- year journey which culminated in his receipt of a new heart on March 16, 2009 at the Morgan Stanley Children’s Hospital of New York- Presbyterian. He is finally home, resting comfortably, except for weekly 5 hour treks to NYC to check in with the doctors who look after his new heart.
Matthew’s journey started the day he was born on December 29, 1993. He was a healthy looking baby at 8 lb 9 oz and 19” long. However, doctor’s soon discovered that he had been born with congenital Aortic Stenosis. Aortic Stenosis is the narrowing or obstruction of the heart’s aortic valve, which prevents it from opening properly and blocks the flow of blood from the left lower chamber of the heart to the aorta. The aorta is the main artery leaving the heart.
Matthew experienced his first heart surgery at 2 weeks old. Since then, he has been in and out of hospitals for many reasons – an appendectomy, removal of his tonsils and adenoids, repair of a deviated septum, 11 different sets ear tubes, and being treated for an MRSA infection. He has also suffered from seizures, asthma, and a thyroid disorder. At 10 years old, he had open heart surgery again. And, as Matthew got older, the heart problems became increasingly severe, until it was recommended in 2008 that he be listed for a heart transplant.
Matthew’s post-transplant biopsies are so far normal, which is a very good sign. His new heart is showing no signs of rejection or infection, two of the most common complications after an organ transplant. His spirits have been boosted after the transplant. He is relieved to be through the surgery and very happy to be home. He had waited almost 4 months in the hospital until he received a heart. Those were lonely months as he missed his home and his stepfather, John. Christmas, his birthday, and Easter were all spent in the hospital, and he looks forward to having Christmas this year at home.
A Mother’s Journey
Julie is exhausted, a bone-deep tiredness. The fifteen years of caring for Matthew, worrying about his condition, and anxiety about the future are weighing heavily on her right now. There have been too many sleepless nights in the last 15 years. The hardest part of the journey for her was watching Matthew as he drifted into sleep just before the transplant surgery, not knowing if she would see him again, praying that he would make it through the surgery.
Having a sick child can be lonely for parents as the exterior world shuts down and everything focuses on your child and his well-being. Julie had very little help until she married John about ten years ago. He has been her strongest support through Matthew’s heart surgery and recent transplant. Julie hasn’t had the time or the energy to build lots of friendships as she raised Matthew. She was either taking care of Matthew or working at her job at the children’s psychiatric clinic.
What’s Next for Matthew and Julie
The future for Matthew is one of slowly returning to “normal”. Plans will unfold as he continues to heal. He looks forward to going back to school in the Fall and returning to the outdoor activities that he loves in the countryside around their home in Holland Patent, NY. He can’t wait to go ‘four-wheeling’ again. Julie says that all of this will happen in due time, and that they need to wait and see how Matthew progresses over the summer. Their plan is one step at a time, slow and easy. Returning to school can be a challenge because Matthew cannot afford to get sick while his heart is healing. In the past has had a tutor from the school so that he could keep up with his school work.
Matthew and his family are grateful for support received from the Bobby Page Foundation in Rome, NY; the Compassion Coalition in Utica, NY; and the Erika Kate Foundation, Muscatine, IA.
When asked how she would pick up the pieces of her life, Julie paused. “Everything depends on what happens with Matthew. I will start exercising again, but mostly hang out with Matthew, playing with him on the Wii games that he enjoys”.
Julie is a steadfast, caring, loving Mother. She will stand by Matthew through the highs and lows, as she has done for the past 15 years. Our Mother’s Day wish for Julie is that she will have time to re-energize and time for friendships, those incredibly powerful friendships that are one of the sustaining threads of our lives.
Our hope for Matthew is that he can return to school, enjoy his teenage years, remain healthy, and look forward to a bright future with his new heart.
