Cousins, siblings, aunts and uncles are all blood relatives. Usually this is a metaphor about the strong bonds holding families together. For six-year-old Colleen, however, this is a fact that might have been the difference between life and death.
Colleen was diagnosed with sickle cell anemia, a serious blood disorder. Her first hospitalization was only eight months after her birth. Fortunately, her brother William was able to provide the cure to her condition. Her brother’s blood is now literally hers as well.
“By the grace of God and the extraordinary medical knowledge and skills of staff at Mott Hospital at the University of Michigan in Ann Arbor, our daughter Colleen is almost three years out of her bone marrow transplant and cured of sickle cell disease,” Colleen’s adoptive mother, Susan Sweetman said.
Sickle cell anemia is a genetic condition where blood cells are shaped in a sickle like the letter “C,” rather than round and smooth. The irregular shape causes the blood cells to die faster than normal cells, resulting in anemia. The shape also causes the cells to stick in blood vessels. According to the Mayo Clinic, the disease can cause many complications including significant pain, stroke, swollen hands and feet, acute chest syndrome and organ damage.
Susan said her daughter suffered many of these complications, and was in the hospital on an almost monthly basis. Colleen was close to having a stroke and had a partially-collapsed lung before her third birthday. Because of damage to her spleen, she has dealt with many infections both before and after her transplant.
Susan, her husband Mark and Colleen’s doctors decided that a bone marrow transplant from a compatible donor was the best hope for Colleen. Colleen has ten biological siblings and several were tested for compatibility. William, one of her three siblings adopted by the Sweetmans, provided the closest match.
Colleen’s transplant was September 2, 2005. The treatment process involved destroying Colleen’s blood producing bone marrow with chemotherapy, and replacing it with adult stem cells taken from William’s bone marrow.
“William followed his stem cell donation up to Colleen’s room and watched the ‘bag of red’ drip into his sister,” Susan said. “We had been told he would likely need a transfusion yet other than taking a short nap, William was unaffected by the whole experience.”
After spending significant time in the hospital, at home recovering and after several follow-up visits, Colleen is officially cured of sickle cell anemia, Susan said. Her brother’s adult stem cells successfully replaced her bone marrow and have been producing healthy and normal blood cells.
Susan cautions that bone marrow transplants involve serious risks and might not be the best decision for every case of sickle cell anemia.
“It’s not for everybody,” she said. “It’s a full five years for recovery. It really affects family life.”
She also said parents facing medical problems with their children need to be active advocates for their children’s needs. She said she once had to stand up to several doctors and nurses who wanted to discharge Colleen from the hospital because her tests looked fine, but Susan knew Colleen still was ill.
“You have to be very proactive for your kid; you know your child the very best,” she said. “You have to speak up for what they need.”
Susan said Colleen has been doing just fine since the transplant. Colleen lives in Livonia with three of her siblings, and three of Susan and Mark’s biological children. Susan said she just completed kindergarten and her first season of T-ball, and can do many things now she didn’t once have the ability to do.
“She goes swimming,” Susan said. “She couldn’t do that before because of sickle cell.”
For more information on bone marrow donation, visit the National Marrow Donation Program website at www.marrow.org.
***Editor’s Update (8/25/11): Susan said that Colleen, who is now nine-years-old, continues to do very well. Her spleen, which had stopped functioning seven years ago, has now healed and Colleen no longer has to take regular antibiotics.***