Nine-month-old Bailey Phillips marked National Blood Donor Week, which ends on Tuesday, with her 100th blood transfusion.
Bailey was diagnosed shortly after birth with a congenital cytomegalovirus (CMV), a common and usually symptomless illness, but doctors now believe she may have an additional problem.
"Bailey is a medical mystery to her specialists," said mom Kristen Phillips. "Her symptoms do not reflect what other babies with CMV go through. They now think it is CMV plus something else."
Unfortunately, doctors do not know what that something else is. Bailey’s specialists have consulted with other doctors around the world, but so far no one has a diagnosis.
Baby Bailey receives two transfusions of platelets a week on Tuesdays and Fridays. Each transfusion is made up of five units of pool platelets.
That is 10 blood donors who are needed to help Bailey survive each week.
"Every single person in our families that can donate blood do now," Phillips said. "It is the No. 1 thing I tell people when they ask how they can help."
The family is overwhelmed by the number of people sharing Bailey’s story and donating blood in her honour. They know someone in almost every province that has donated in Bailey’s name.
"Being a blood donor saves so many lives," Phillips said. "During our time in the hospital we met so many little kids in the oncology ward that need transfusions as often or more often than Bailey."
Phillips and Bailey lived in the hospital in Winnipeg for the first 111 days of her life. Meanwhile, dad Garret and older sister Leah were living at home in Roseland.
"It has been so nice being at home, just being able to have some amount of normalcy especially for Leah," Phillips said. "We can’t go out in public because Bailey’s immune system can’t handle germs, so we practically live with hand sanitizer."
In addition to her blood transfusions, Bailey continues to see specialists in Winnipeg from 10 different medical fields. Phillips said she has to go to Winnipeg anywhere from two to seven times a month.
What Bailey’s future holds is unknown at this point because of the lack of diagnosis on her conditions. Phillips said the doctors are eliminating possibilities of what they think could be happening in addition to CMV.
Doctors remain impressed and optimistic with how Bailey is developing. They have seen no hearing or vision problems that are often associated with CMV patients.
She is hitting all her milestones, said Phillips. She is able to sit on her own and is very close to crawling.
"Bailey is one of the best things to happen to us, Leah being the other best," Phillips said. "We are so blessed for all the love and support we have gotten."
Celebrating Bailey’s 100th blood transfusion was not something Phillips ever considered. She said she wants to thank all the people that have shared Bailey’s story and donated in her honour.
» Twitter: @megan_lane2