We traveled from Arizona so our son, Drew, could have a heart transplant at Children's.
In April, we took our 2-year-old son Drew to a pediatric cardiologist for what we expected to be a routine visit. Instead, we received the shock of our lives: Drew had restrictive cardiomyopathy, a rare condition affecting his heart muscle, and the only “cure” for it was a heart transplant.
Drew was immediately admitted to Phoenix Children’s Hospital, near our home in Scottsdale, Arizona. There he underwent further tests, and we were given a list of 11 pediatric heart transplant centers covered by our insurance. None of them was in Arizona. We were still numb, but we spent the remainder of the day on our computer researching them.
We liked what we learned about Children’s Heart Center and its transplant program. We were put in touch with cardiologist Jeffrey Gossett, MD, a member of the transplant team, who suggested that we come to Chicago as soon as possible so Drew could be evaluated as a candidate for a new heart. He also told us to be prepared to spend up to a year in Chicago, because of the wait for a donor heart, and then the follow-up care after the transplant. Ten days later, we were on a plane to Chicago.
Drew was admitted to Children’s Pediatric Intensive Care Unit (PICU), where he underwent a battery of tests. Fortunately, he was a viable candidate for a new heart, and Drew was immediately added to the transplant list. We checked into Kohl’s House, a nearby facility offering housing for transplant patients and their families.
Chicago Cub Darwin Barney visited Drew at Children’s during his recuperation from a heart transplant.
Two days later, Drew went into sudden cardiac arrest. In an instant, there were about 30 people in his room doing everything they could to save him. Once he was stabilized, he was placed on a heart-lung bypass machine called ECMO, and over the next few days Drew began to improve.
Things were moving quickly. A couple of days later Dr. Gossett called us after midnight to tell us that they had found a new heart for Drew. While our initial reaction was that of joy, we also felt for the family that had suffered a tragedy in order for this heart to become available for our son.
The transplant was scheduled for the next morning. We got almost no sleep that night, and after nine hours of surgery, Carl Backer, MD, the head transplant surgeon and the program’s surgical director, told us that Drew’s procedure had gone as planned, and that his new heart was in place and pumping normally.
The highs and lows continued, however. Five days after the surgery, Drew suffered a stroke. It was an enormous setback, because he had been recovering so well, and the function of his new heart was getting better each day. The next few days were critical.
Once again, Drew fought back. We knew he was going to be OK when we saw him the next morning holding little pen lights in each hand and waving them around. His spirits were amazing for all he had endured. Bit by bit, our Drew came back to us.
One day Drew, who has already been to more than 50 baseball games, had a very special visitor: Chicago Cubs infielder Darwin Barney. Darwin was incredibly kind and gracious, and visited with us for over an hour. He brought gifts, including a Cubs jersey for Drew with “Boedigheimer” on the back. It was a very special day for our little baseball fan! (See a WGN-TV video of Darwin’s visit with Drew.)
Forty-five days after he was admitted, Drew was discharged from Children’s. Since then we’ve been staying at a downtown hotel so we can be near the Rehabilitation Institute of Chicago, where Drew is undergoing physical and occupational therapy to strengthen his legs and catch up developmentally. Drew can now stand up and walk on his own, and his strength has greatly improved. While Drew will need another transplant when he gets older, the gift of a heart has also been a gift of “time” for us—time to be with our child and time for new medical advances to be made.
When we leave Chicago, our departure will be a bittersweet one, and we have so many people to thank in our Children’s “family” the wonderful doctors, the awesome nurses, the techs and so many, many others. Their care and expertise saved our little guy’s life, and we are so grateful that we found our way to Chicago and to this phenomenal hospital.
When the hospital’s new facility, Ann & Robert H. Lurie Children’s Hospital of Chicago, opens in June 2012, it will include the Regenstein Cardiac Care Unit. Encompassing an entire floor, the 36-bed unit will allow children like Drew with complex heart conditions to receive care from admission to discharge in one location from a diverse team of cardiology and cardiovascular surgery subspecialists.
Story originally appeared in the August 2011 issue of Heroes Update.