13 May Sara’s Story: A Home to Heal Together
As told by Sara’s mother
When you find out your unborn child has a severe congenital heart defect, many thoughts bombard your mind: What will her life be like? Will she be “normal”? Will I outlive my child? Through the course of three open-heart surgeries, three cardiac catheterizations, a wound infection, sepsis, a chylothorax, multiple days in the ICU, and weeks in the hospital, we worried about so much. One thing we did not have to worry about was how we would be able to stay close enough to be with Sara during her stays in the hospital, thanks entirely to Ronald McDonald House Charities® of Greater Washington, DC (RMHCDC).
ONE WEEK OLD: FIRST SURGERY
At Sara’s twenty-week ultrasound, the obstetrician gently informed us that little Sara’s heart developed very abnormally and would require at least one, and most likely several, heart surgeries. Despite the fact that congenital heart defects are the most common congenital birth defects, we knew nothing about them and had no idea what to expect. She needed to be born two hours from our home, in order to have the first surgery she would need shortly after birth.
One week after Sara’s birth, she had her first surgery. She spent the next three weeks in the ICU, recovering from surgery and fighting off a wound infection and sepsis. While staying at RMHCDC we immediately felt at home, with friendly staff and kid-friendly surroundings. Our oldest daughter, Rachel, was able to stay with us and while her new sister may not have appreciated her presence, we certainly did. RMHCDC was our home for Sara’s first month of life.
NEW HOUSE, SAME HOME
At seven months of age, we made the trek to Children’s National Medical Center for Sara’s second heart surgery and another stay at RMHCDC, where we were warmly welcomed by friendly staff that truly cared about our journey.
Our final stay at RMHCDC, just days after Sara’s second birthday, was for her third open-heart surgery. This time we had the honor of being the last family to stay at the old Ronald McDonald House of Washington, DC and the first family to stay in the new House. And what an amazing new House it is! We felt as close to “at home” as possible.
It may seem minor in the grand scheme of life and surgeries, but it was such a blessing to have a private bathroom! Not to mention the comfortable beds, large kitchen, library, laundry facilities, play area… So very much to be thankful for! Sara was in the hospital for two weeks this time. My husband and I were able to alternate nights in the hospital with Sara, knowing that the other was getting a good night’s sleep, while still close enough to rush to the hospital if needed.
MORE THAN JUST SHELTER
If we had stayed at one of the least expensive motels/hotels in DC, our bill would have been $1400+ for her most recent hospital stay alone. Our stay at RMHCDC cost an optional $150. Total. We were both able to stay nearby throughout her hospitalization – we didn’t have to take turns so that we could continue to work to pay a hotel bill. We were able to fix “homemade” meals for ourselves and our daughter in the spacious kitchen. We felt so incredibly cared for, not only by the community members, including school children, corporate groups, and kind-hearted individuals who donated Christmas cookies, balloons, and entire meals, but especially by the amazing staff who never failed to take an interest in our daughter’s health.
RMHCDC not only provides shelter, but also provides camaraderie. Those who have not had to experience a major medical illness in their children are truly blessed. However, RMHCDC serves to remind us just how very blessed we are.
Update: Sara has been doing great and her family returned to celebrate her 10th birthday with us!