Banner Care For Our Bonus Baby

By Dawn Campbell, mother of Qavah

IMG_7413Our third child was about to graduate from college and we were talking about retirement, travel, and our empty nest, when we found out that God had other plans for us. We were given a bonus baby. That’s the baby that comes along in life long after mom and dad think the family is complete. We traded our dreams of ease for a different kind of life. In what we consider to be a miracle, we heard about a little girl with a rare blood disease who needed a family and a permanent home. She had been living in the United States foster care system in a rural area of the country. Born with bone marrow failure, she was dependent on monthly blood transfusions to keep her alive. A social worker on her case explained to us that her healthcare was a full time job and the prognosis was grim. In short, we met our little girl, Qavah, just after her fourth birthday, added her to our family, and fell head over heels in love with her. We rolled up our sleeves and went to work exploring options for our new daughter. We literally searched the internet day and night looking for medical intervention and treatment for our girl.

We began by taking Qavah to the National Institutes of Health (NIH) and, after extensive testing, including genetic testing, we recognized that we were dealing with a rare disease, bone marrow failure, an inadequate immune system, irritable bowel syndrome, and several other issues. The diagnosis we received at the NIH and the advice they gave us, led us to consider the option of a bone marrow transplant. At that same time, we were also told that given Qavah’s heritage, (Jamaican and Creole), finding a donor match would be like “finding a needle in a haystack.” Undaunted by that news, we continued to follow every lead by researching medical centers in the hopes that we would find a medical team to address the problems our daughter struggled with daily.

Our normal life melted away and was replaced by endless diarrhea, skin boils, blood transfusions, and multiple hospital stays. After four years of intense care, one night we sat down in front of our computer, desperate for help. Qavah was growing weaker and her system was overloaded with iron from years of red cell transfusions. We typed into Google, “BMT for immune diseases and bone marrow failure”. On that night, a name popped up – Dr. Paul Szabolcs. As we read his biography, we felt an immediate connection, and we decided to call his office the following day. His practice at the time was at Duke University, just three hours from our home. Our first conversation was encouraging, but it ended with Dr. Szabolcs stating that he was leaving Duke to take a position at Children’s Hospital of Pittsburgh of UPMC. He encouraged us to watch an online promotional video about the new hospital, and encouraged us to meet him there. We watched the video and we were impressed by the facility, the staff, and the nearby Ronald McDonald House. Within a month, we made our decision to visit Pittsburgh.

On our first visit, we discovered that there was groundbreaking BMT research happeningIMG_7338
right in the heart of Pittsburgh. It was explained to us that with a mixture of different chemotherapy drugs to wipe out a faulty immune system (thereby lowering the risk of rejection), the doctors would be able to use a bone marrow donor that was not a perfect match but a near match. In the end, it wasn’t necessary to find that “needle in the haystack”, which was a good thing, because every donor base was checked and there were no perfect matches available.

We also discovered that bone marrow transplants are not only for those suffering with blood cancers, but they also offer hope to those with rare diseases like Diamond-Blackfan Anemia (our daughter’s diagnosis). Rare diseases can be debilitating and, in our daughter’s case, bone marrow failure and chronic anemia kept her from growing and keeping up with other children.

Qavah was admitted to the BMT unit on Mother’s Day of 2012. Her transplant took place in June of 2012. Her donor cells came from cord blood and was the lifesaving ticket to freedom that we had hoped and prayed for. We remained in Pittsburgh for several months, working through the complications of transplantation one at a time. Nine months later, we took home a brand new baby! Although our “new baby” was nine years old by then, she was experiencing a normal life for the first time. No longer plagued by fatiguing anemia, and the need for transfusions, Qavah has grown strong; she has learned to swim, dive, ride a bike, and live like a normal kid.

IMG_7332During our forty years of married life, we have renovated a few homes and built businesses to use the skills and talents God gave us.  Although we’ve enjoyed many successes in life, we would say that being given a “bonus baby,” and watching miracles unfold, has been one of the most rewarding experiences we have known in this life thus far. It wasn’t easy to give up the comforts of our home in Virginia, nor was it easy living apart from the rest of our family. However, we found that Children’s Hospital of Pittsburgh was just right for our family. With the Ronald McDonald House keeping us warm and fed, and by forming friendships with the other families on 9B, the BMT team, nurses, and Child Life specialists, our “family” has dramatically increased in number.  Our time in Pittsburgh and the memories are near and dear to our hearts as we watch our daughter thrive and grow before our very eyes. Qavah did not become healthy on her own. She had a strong medical team behind her, cheering her on, and there were many answered prayers.

Now, post-transplant, we only visit Children’s Hospital of Pittsburgh once a year for follow up appointments. On those check-up days, there is a sense of joy in the atmosphere as we greet those who worked so hard to bring Qavah through a very difficult time. You might say it is like a family reunion. We’re thankful beyond words for the life affirming values we observed at Children’s. Life is precious, and we gratefully acknowledge that our bonus baby was the recipient of excellent care.

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Down Syndrome Prenatal Education Act (“Chloe’s Law”) Passed

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By Kishore Vellody, Medical Director, Down Syndrome Center of Western Pennsylvania, Children’s Hospital of Pittsburgh of UPMC On July 18, 2014, a Pennsylvania law was signed by Gov. Tom Corbett requiring that a mother who receives a prenatal diagnosis of … Continue reading

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Hayden’s Journey with Biliary Atresia and Liver Transplant

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By Heather Vanzandt, mother of Hayden My son, Hayden William Vanzandt, was born Oct. 17, 2012 in Seneca, Pennsylvania. Weighing 8 lbs., 6 oz., and ranging 23” long, he was a perfectly healthy baby boy, except for his bilirubin level. … Continue reading

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