National Blood Donor Month: Mackenzie’s Story

Before Mackenzie James-Wong was born, prenatal ultrasounds and testing diagnosed her with TAR syndrome, a rare genetic disorder that meant she was missing a bone in each forearm and had a dramatically low platelet count. Doctors also detected a heart defect that would require surgery immediately after she was born. Her mom Lindsay changed her birth plan so she could deliver at St. Joseph Hospital, and Mackenzie could immediately be under the care of nearby CHOC Children’s.

Her family’s relationship with CHOC’s Blood & Donor Services Center started when Mackenzie was in the Neonatal Intensive Care Unit (NICU).  They quickly learned how many transfusions lay ahead of them.

A healthy baby’s platelet count at birth is 50,000. Mackenzie’s was just 13,000. She needed transfusions right away. Mackenzie spent the first six weeks of her life at CHOC, and received dozens of platelet transfusions during that time. Over the next three years, she received nearly 200 blood and platelet donations.

MackenzieJamesWongNICU
Mackenzie spent the first six weeks of her life in CHOC’s Neonatal Intensive Care Unit.

“Sometimes she needed two transfusions in the same day. Eventually it slowed to every other day, and then once every 10 days, but then we regressed back to every four or five days,” said Lindsay. “The team from Blood & Donor Services visited us in the NICU, and educated us about the importance of finding regular donors who were a match for Mackenzie and who could provide a reliable and steady stream of platelet donations to fulfill her needs.”

The Blood & Donor Services Center identified two donors who were each a perfect blood and platelet match for Mackenzie. With her family’s permission, the donors heard Mackenzie’s story and how they could help. They opted into the Designated Donor Program, which allows a donor’s blood and platelets to be directed to a specific CHOC patient in need.  Mackenzie has since met her donors, who have become part of her family, Lindsay says. Every year in December, one donor dons a Santa Claus suit, grows out his beard, and brings Christmas gifts to his donation appointment for Mackenzie and her older sister. The pair of donors come to Mackenzie’s birthday party every year, and have been known to rush home from vacation to make special platelet donations if Mackenzie is in need.

Mackenzie at age four
Mackenzie at age four

Every time Mackenzie has an appointment at CHOC, she stops by the Blood & Donor Services Center with her mom to personally thank donors for helping kids just like her.

“I tell these donors every time I see them that they are literally saving my daughter’s life with every donation,” says Lindsay. “She would not be here without platelet donations. When they donate blood and platelets at CHOC, it stays at CHOC to help patients like my daughter.”

In 2015, CHOC donors supplied 45 percent of the blood and platelets needed by CHOC patients requiring a transfusion. CHOC had to purchase the remaining needed blood products from outside sources.

“Having blood and platelets come directly from our blood donor center allows us to have the freshest blood available to meet the critical needs of our patients, and support our recently opened Trauma Center,” said Colleen Casacchia, RN, manager, CHOC’s Blood & Donor Services Center. “CHOC relies on blood donors in our surrounding communities to help meet our patients’ transfusion needs. One blood donation can save two lives and only takes about one hour of time every two months.”

Donating blood and platelets at CHOC has become a family affair for Mackenzie’s relatives. Her dad, grandparents and aunts all donate blood and platelets at CHOC in honor of Mackenzie.

For Lindsay, donating blood began at a young age. She celebrated her 17th birthday by making her first blood donation. Although she isn’t a match for her daughter, she regularly donates blood at CHOC to help other patients in need.

“I can’t always give financially, but blood is something I have plenty of, and it really doesn’t take that much time out of my day,” she says.  “It was always something I was passionate about, but once it hit my family, I realized how life-saving it truly was. I want other persons to realize how important it is to donate blood and platelets, before someone in their family has a need for it.”

Learn more about donating blood and platelets at CHOC to help patients like Mackenzie.

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5 thoughts on “National Blood Donor Month: Mackenzie’s Story”

  1. I just want to say that Mackenzie is a beautiful little girl and I just found out on March 23rd that I have a granddaughter named Harper Grace has tar syndrome and she’s a beautiful little girl also and this is all new to us and we’re trying to find anything in that we can find any information that we can find that may help her she is at Texas Children’s Hospital in Houston Texas and if there’s any information that would help us with her will be greatly appreciated. Both of her arms radius Bone are missing everything else appears to be okay she does have a small hole in her heart but they feel that it will be just fine the way it is and right now she has so far as of March 29th she has had one blood transfusion due to low platelets and hope it does not go down anymore , right now it is 66 so that could be a possibility of future transfusion like I said we are new at this but learning.

    1. I’m Jackie, Mackenzie’s grandma. Have her parents join the FB page Children with TAR. Great advice from people all over, different stages from birth to adult and different degrees, short arm, long arm, legs. My daughter actually organized a get together for TAR families here in So Cal. It’s great support. Our Mackenzie has such great confidence and there’s nothing she can’t do!

      1. Hello Jackie, my daughter has TAR syndrome and I was wondering how I may contact with Mackensie’s parents? I was wondering if she had any surgeries and more I formation about the social. Thank you

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