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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Treating Hemophilia Today and Tomorrow

Much has changed in the ways of treating hemophilia – an inherited bleeding disorder in which a patient’s blood does Hemophilia_CHOCnot clot properly – and even more changes are on the horizon, says a CHOC Children’s hematologist.

“Within just the last 20 years – one generation – is when we began having factors to treat the patients with hemophilia,” says Dr. Diane J. Nugent, chair of hematology and medical director of hematology and Blood and Donor Services at CHOC Children’s. Dr. Nugent also is the medical director of the Hematology Advanced Diagnostic Lab.

Today, hemophilia is treated by replacing the missing blood clotting factor so the blood can clot properly. This is done by administering factor concentrates into a vein. Today, patients can perform these infusions themselves at home to prevent and stop bleeding episodes and enjoy a better quality of life, she says.

“Thanks to therapy, kids can play sports, attend school like any other child and live a full and complete life,” Dr. Nugent says. “Just a generation ago, by the time they were adults, patients with hemophilia were disabled. Today’s treatments are safe and lots of people can do this at home with no problems. This gives the patients more independence.”

Those with hemophilia are typically treated twice a week at home, but new treatments for some patients reduce the frequency. Some patients can now treat themselves as little as once a week because of a new long-acting factor to correct their bleeding.

A new long-acting product called Alprolix treats about one out of six patients who have a type of the condition called hemophilia B. In addition, a long-acting factor for different but common type of hemophilia will be coming out soon as well, Dr. Nugent says.

“Long-acting factors for hemophilia patients will reduce the frequency of IV pokes and will greatly improve their quality of life because now they will only need to treat themselves once a week,” she says.

Because hemophilia is a genetic disorder, specialists hope the condition will one day be corrected through gene therapy.

“Those genetic trials are ongoing at Stanford University and starting with adults,” Dr. Nugent says “We hope that will trickle down to kids in the next decade.”

According to the Centers for Disease Control, the median age in the United States for diagnosis 3 for those with mild hemophilia, 8 months for those with moderate hemophilia, and 1 month for those with severe hemophilia. In most cases, there is a family history of hemophilia.

CHOC always needs new donations of blood and platelets to help patients with hemophilia. To donate blood or platelets, call 714-509-8339 or email donatebloodforkids@choc.org to make an appointment.

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Video: Thank You, Blood Donors!

An important part of the CHOC Children’s family is Blood and Donor Services, the department that helps collect blood products for our patients.

Did you know that one pint of blood can save two lives? And your donation at CHOC goes directly to a child.

I’d donate if I could, but unfortunately, my blood type — B for bear — isn’t what the patients need. Instead, I donate hugs and offer endless praise and thanks for the generous people who give blood at CHOC.

Check out this fun video to learn more about the numbers that drive Blood and Donor Services at CHOC.

By the Numbers: Blood and Donor Services

January is National Blood Donor month, but CHOC Children’s appreciates its blood donors all year long. After all, blood products are needed each and every day to help care for patients.

Let’s look at the numbers that drive Blood and Donor Services at CHOC:DSCF8506

365 – Days a year that blood is needed at CHOC

100 – Percent of blood donations at CHOC that help kids

10 – Average number of pints of blood in an adult body

2 – Lives saved by 1 pint of blood

65 – Percent of CHOC’s total blood needs met by donations

35 – Percent of CHOC’s total platelet needs met by donations

1 million – Dollars CHOC spends annually to purchase blood products

42 – Days that red cells last after donation

5 – Days that platelet products last after donation

200 – Average number of blood donations per month at CHOC

50 – Average number of platelet donations per month at CHOC

6 – Times per year that donors can give whole blood

45 – Minutes the blood donation process lasts at CHOC

3 – Cookie choices available to donors at CHOC

Have you given blood before? Donating at CHOC is fast and painless thanks to expert and efficient staff. Even better, your donation directly helps children served by CHOC.

The department is open Monday through Friday, and same-day appointments are often available. Call 714-509-8339 or email donatebloodforkids@choc.org to schedule an appointment.

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CHOC Blood Donors: Like Father, Like Son

Since 2006, father and son Jerry and Jeremy Wilcox have had a standing date every eight weeks at CHOC Children’s:  Together, they roll up their sleeves and donate blood.

“We both have the mindset that if we can help people, then we help people,” Jeremy says.  “We may not always have the money to donate to organizations, but we do have time and we do have the ‘good veins.’ Because of that, we are just doing what we can to help those in need.”

The father-son tradition of giving life together is particularly significant with Father’s Day this weekend – as well as the nearing of summertime, which is traditionally a season of low blood donations at CHOC Children’s and blood centers nationwide. At CHOC Children’s, donation rates are typically 20 percent lower during this time.

The Wilcox men’s multi-generational tradition of donating blood extends well past 2006: Jerry’s own father was a frequent donor, which inspired Jerry to begin donating in college. Jerry had a similar influence on Jeremy.

In addition to providing a way to help others, the Wilcox men’s regular donations allow the duo an opportunity to take a break from their busy lives and catch up.

“I enjoy it,” Jerry says. “It’s a chance for us to see each other at least every eight weeks. We walk in, there’s no wait. We get to talk for an hour, and we get great cookies.”

Jerry began donating at CHOC Children’s in 2005 as a participant in the hospital’s Designated Donor Program, which allows blood donations to be directed to a specific patient.

Jeremy’s long tradition of blood donation began in high school. Now the father of two small children, he has a finer understanding of the significance of blood donations in a pediatric setting.

“If my kids got sick, they’d come to CHOC,” he says. “CHOC takes care of me, and I have all the confidence that they would take great care of my children.”

Despite the steadfast commitment from the Wilcox men and other blood donors, CHOC Children’s is in desperate need of blood donations of all types year round. Donations meet just 65 percent of the hospital’s annual need, and blood platelet donations meet just 35 percent of CHOC’s need. To supplement donations, CHOC spends more than $1 million annually to purchase necessary blood.

“Just try donating once,” Jeremy says. “It doesn’t hurt, and it gives you a warm fuzzy feeling that you could really help someone.”

Learn more about blood donation.

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January is Blood Donor Awareness Month

January is Blood Donor Awareness Month. The Blood & Donor Services program at CHOC Children’s provides comprehensive blood therapy for children. This ranges from blood donor collection services to therapeutic procedures. The program offers designated donor and autologous donor programs for both blood and platelet products to support children undergoing surgery, cancer treatment, and various other conditions.

CHOC relies on volunteer blood donors like you, your friends and co-workers to meet these needs. Donating blood is a safe and easy process, and all blood types are needed.Volunteers who donate can leave knowing they will have a direct impact on the recovery of a child.

Check out these interesting facts from the American Red Cross:

  • 1 pint of blood can help save up to 3 lives.
  • Adults have around 10 pints of blood in their body. 1 pint is given during a donation.
  • Blood cannot be manufactured; it can only come from volunteer donors.
  • 5 million patients in the U.S. need blood every year.
  • Every 2 seconds someone needs a blood transfusion.
  • The average red blood cell transfusion is approximately 3 pints.
  •  A single car accident victim can require as many as 100 pints of blood.
  • There are four types of transfusable products that can be derived from blood: red cells, platelets, plasma and cryoprecipitate. Typically, two or three of these are produced from a pint of donated whole blood.
  • Platelets, critical for cancer patients, have a shelf life of about 5 days.

To donate blood to CHOC patients, please call 714-509-8339. For more information, please visit http://www.choc.org/programs-services/blood-donor-services.

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