Late in 2008 was such a stressful and frightening time for our family. For weeks my maternal intuition was telling me something was wrong. Leanny was always so fatigued, short of breath and had a ghostly pale skin tone.
Other facilities couldn’t seem to find the root cause of the problem. Some thought she had asthma, while others thought I was just an overly concerned, first-time mom. Finally, Texas Children’s Hospital came back with a diagnosis that would forever change our world — dilated cardiomyopathy.
Leanny’s heart was weak, enlarged and had stopped pumping blood efficiently through her body, thus affecting the lungs, liver, pancreas and other vital organs. Her life was in immediate danger. We could lose our daughter. She needed a new heart as soon as possible, but none were available.
While we waited, the doctors at Texas Children’s Heart Center told us about a new temporary solution, the Berlin Heart EXCOR Pediatric, the first ever ventricular assist device (VAD) to provide long-term cardiovascular support. They explained that the Berlin Heart would not be totally implanted inside Leanny’s body; rather, flexible tubes would be in the heart and they extend through the skin and connect to a small pump located outside the body. That pump, along with its computerized drive unit, would maintain blood flow. I was very skeptical and concerned for my young daughter, but am so glad we finally made the decision to use the Berlin Heart.
Texas Children’s Heart Center had implanted more Berlin Heart devices in the course of the study than any other center, so I was confident we were in the best hospital available. This amazing device pumped lifesaving blood through Leanny’s body until she received a transplant 4 months later.
Although those months in the hospital were incredibly difficult, Leanny is now a happy and energetic 4 year old. I couldn’t imagine my life without this precious little girl. I am so thankful to the team at Texas Children’s Heart Center for giving my daughter the opportunity to live such a full and healthy life!