Aubrey Rose Hollenkamp's Story

Aubrey Rose Hollenkamp was born in Cincinnati on November 12, 1997, six weeks premature. When she was born, the obstetrician said that she has an angel watching out for her because her placenta was tearing away and seconds later, she could have bled to death. This is how Aubrey came into the world! It was a fight right from the start!

It was soon discovered that she had two holes in her heart. Surgery repaired this at 10 weeks of age. At 6 months she got a clean bill of health, but at 9 months, Aubrey was diagnosed with a condition called "Scimitar Syndrome". This is an extremely rare situation where two of her pulmonary veins traveled to her liver instead of to her lungs. We went to the Cleveland Clinic for this repair, which included two more open-heart surgeries, a tricuspid valve replacement and a permanent pacemaker. Aubrey was in the hospital over Thanksgiving, Christmas and New Years of 1998.

We came home the middle of January, 1999, on oxygen and a feeding tube. Not only did Aubrey have Scimitar Syndrome; she also had right pulmonary vein stenosis, a condition where her pulmonary veins were closing. Aubrey took a turn for the worse on May 4, 1999, and we were life-flighted to Philadelphia on May 7 for a heart and double lung transplant. We were on the waiting list for 13 days. Aubrey's lungs started hemorrhaging and she was put on ECMO (Extracorporeal Membrane Oxygenation) which is advanced life support on the morning of May 19, 1999. That afternoon, miraculously, there were organs available and they were a perfect match. It was a very rough road to recovery. Aubrey was in the hospital for 4 months. Through everything that Aubrey has been through, she always kept a smile on her face!

Every 3 months thereafter, we went back to Philadelphia for biopsies and checkups. At a year after transplant, her doctor found that Aubrey's right lung was twisted behind her heart and crushing her left lung and Aubrey needed another surgery. The doctors had never seen this before. Aubrey was always teaching the doctors, nurses and her parents a lesson. So she had unexpected surgery a few days later to have a lobe of her new lung cut off.

Aubrey was loving life once she recovered from this surgery and we were getting prepared to go back to Philadelphia for her doctors visit. We could not wait for the doctors in Philadelphia to see how well Aubrey was doing.

We had the shock of our lives on November 10, at 12:20 a.m., Aubrey passed away suddenly. The autopsy results showed that Aubrey had chronic lung rejection, and unfortunately, there would have been nothing that we could have done about this condition had we known. God took Aubrey quickly and painlessly.

Doctor's Letter

Her heart and lungs were my focus. They were what connected us; Aubrey the patient, me the transplant physician. I had heard of Aubrey shortly after my arrival in Cincinnati in 1999. She had miraculously received and survived a heart-lung transplant in Philadelphia and was coming back home to face what I predicted would be months of struggles with rejection, infection and hospitalizations.

Instead, what faced me that first postop clinic visit and what faced me each subsequent visit, was a little angel. The electrocardiograms, echo cardiograms, and heart biopsies were nearly perfect. Her lungs were a bit more problematic, needing an extra surgery to correct adhesions and an extra boost of immuno suppression to correct a worrisome chest x-ray. No matter what we put her through, she remained a little angel. No tears, no fears, always smiles.

Eyes that saw everything and gave reassurance to both me and her mother that life was good. her fingers, soft, pink, and unscarred, pointed me to see and feel everything that she did. She was a good sharer.

It was remarkable how healthy Aubrey was and how good she felt. That only made her sudden death a greater shock. I learned a lot from Aubrey. The doctors, nurses and our associates at Children's Hospital also learned a lot. Everyone misses her visits, everyone misses her family. Taking care of her was easy. She was the perfect patient. Not being able to take care of her is the hard part.

Dr. Robert Spicer

Transplant Cardiologist
Cincinnati Children's Hospital Medical Center