Story Update: Three years later
THREE! Three years of precious life. Three years of navigating Factor XIII.
Brynn Schulte was diagnosed with Factor XIII shortly after she was born in 2019. Factor XIII deficiency is an extremely rare blood disorder characterized by abnormal blood clotting that may result in abnormal bleeding.
"It remains my mission, and will continue to be, year over year, to bring awareness to the life saving, selfless act, of donating blood," says Lindsay Schulte, Brynn's mother. "It is literally and figuratively the heartbeat of our family. It gives our Brynn LIFE."
To date, Brynn has received roughly 624 infusions of Corifact (Factor XIII medication). 624 selfless blood donors have saved Brynn’s life.
"The impact of donating blood is staggering, necessary, and heroic," Lindsay explains.
Brynn is administered with Corifact (human derived plasma) every other day, through her port and even wants to help put on her numbing medicine 30-45 minutes prior, securing it with her tagaderm on her own. She has her routine - from wearing her “own sterile gloves” and mask, to applying pressure to the port after the infusion. She neatly places her FROZEN bandaid over top.
"She is determined to be involved and handles this routine with such ease and confidence," says Lindsay.
Unfortunately, Brynn’s inhibitor remains, thus her need for such frequent infusions.
"Our hope is that one day her body will welcome her medication for longer periods of time," says Lindsay. She has labs performed monthly to continuously evaluate her levels and progress.
"Brynn’s diagnosis is 1 in 5 million. She’s rare. Perfectly rare. And we are so thankful to Cincinnati Children’s, Hoxworth Blood Center and its donors, and the Tri State Bleeding Disorder community for fiercely loving and supporting our Brynn," Lindsay says.
Brynn Nicole Schulte is growing into a happy, healthy, lively little girl.
At nearly 1 year old, “she loves to wave, smile and dance to nursery rhymes, and she is learning to blow kisses,” according to her mother, Lindsay Schulte. “No one is funnier to her than her older brothers, and she squeals and giggles at them all the time. She loves to be in the ‘action’ and gets mad if she feels like she isn’t included in the room!”
Seeing Brynn today—full of life, with wide, bright eyes and a sunny smile—you would have never known how gravely ill she was shortly after her birth in July of 2019.
With the care of Cincinnati Children’s Hospital Medical Center, and the help of blood donors, Brynn is here to celebrate her first birthday.
Lindsay and Mike Schulte, who live in the Pleasant Ridge neighborhood of Cincinnati, were thrilled to welcome a girl to their family of boys. “We have two boys—Luke, who will be 5 in September of 2020, and Nate, turning 3 in August,” says Lindsay. “We LOVE to play outside, go to the zoo, and walk to the local coffee shop. The boys were ELATED to have a baby sister, and we were so excited to have PINK sprinkled throughout our house!”
Baby Brynn was born healthy on July 24th, 2019 via scheduled induction at Good Samaritan Hospital. However, the excitement of the new addition to the Schulte family was short-lived.
“Unfortunately, Brynn had to be rushed to Cincinnati Children’s Hospital a day after she was born,” Lindsay recalls. “Katie, her nurse in the labor and delivery unit, SAVED her life. They woke me up in the middle of the night because Brynn was grey and had labored breathing. It was a whirlwind. When we arrived at Children’s, more than a dozen health care workers surrounded Brynn, working to stabilize her.”
Through many tests and examinations—and many theories for the cause of Brynn’s condition—Brynn was discovered to have an internal bleed, which took everyone, including the doctors, by surprise. After ruling out the bleed was not the result of a tumor (as it looked like a mass on her liver), doctors identified the mass as a hematoma. The root cause of this remained unclear, but Brynn was cleared to go home with her parents after two weeks at Cincinnati Children’s.
But again, the relief proved to be fleeting. After just two weeks of being home, Brynn experienced another life-threatening setback.
“I had to rush Brynn to the ER where she was diagnosed with pressure and bleeding in her brain,” Lindsay recalls. “The amazing ER team saved her life once again, and she was in surgery within an hour of arriving. Her neurosurgeon performed a lifesaving procedure, placing a shunt to relieve the pressure in her brain. She fought and handled the surgery with her consistent strength. They also identified a large blood clot on the base of her brain. It was too risky to operate, so they continued to monitor her very closely.”
Throughout all of this, Brynn fought for survival and prevailed, receiving blood transfusions and a startling diagnosis.
“Our sweet and special Brynn has been diagnosed with factor XIII deficiency. It’s a VERY rare blood disorder, 1 in 5 million,” says Lindsay. “She’s “red carpet” status at Cincinnati Children’s, as it is the first case they have ever seen or treated. The research team at Children’s helped us confirm this recessive gene disorder. While her long care is constant, we are so thankful for her life. We call her our ‘winning lottery ticket’--1 in 5 million.”
In addition to the incredible team at Cincinnati Children’s Hospital Medical Center, blood donors played a critical role in Brynn’s survival.
“Blood donors are our HEROES. They give Brynn life, and they give our family life,” says Lindsay. “As parents, we are here to protect our children—but we are at the mercy of blood donors, which is a truly humbling feeling. It has taught Mike and I a lot about the human spirit, selfless compassion, and pure goodness in people.”
“To donors, we say THANK YOU from the bottom of our hearts,” she continues. “We have Brynn because of YOU. Now she can continue to grow and thrive. She has so much purpose and because of YOU, a blood donor, she is going to be able to show this world purpose.”
But Lindsay isn’t stopping at just saying “thank you”—she’s taking her gratitude one step further and paying it forward.
“Mike and I had never given blood before. We donated for the first time this winter, on a donor bus. We thought, ‘Wow, that was so easy!’ Then I began to reflect on how we could celebrate Brynn’s first birthday in a unique and meaningful way. I called Hoxworth and asked to speak to someone who could help me coordinate a drive.”
In honor of Brynn’s incredible journey and to celebrate her first birthday, Lindsay and her family are organizing the ‘Brynn’s Birthday Blood Drive’ to collect lifesaving blood donations and save even more lives in the Cincinnati community.
“We want to ‘pay it forward’ to those that have helped us along our journey,” Lindsay explains. “We want to show our gratitude, by giving back, as well as bringing awareness to how important, and EASY, donating blood can be. People want to ‘help’ or ‘give’ in times of crisis, and this blood drive is a way for people to truly give back. We are starting a tradition, and it begins this year!”
Reflecting on the past year, Lindsay is certain that Brynn is here to celebrate her first birthday because of the compassionate team at Cincinnati Children’s, and the generosity of blood donors—and when she looks at her “1 in 5 million” daughter, she is reminded how much good there is in the world.
“Mike and I feel so lucky to be Brynn’s parents,” she says. “Brynn has taught us how precious life is. She has taught us how much good exists. She is so special. She has so much purpose. She has such a bright future.”
A future, she adds, made possible by blood donors. To the donors who saved her life, Lindsay has one last message of gratitude.
“THANK YOU for all that you do! What you do matters. Blood transfusions SAVED Brynn’s life. They save Brynn’s life EACH day. We have our sweet girl with us EVERY day because of generous and selfless blood donors…and we can’t wait for her to continue to show this world what she’s made of. After all, she is 1 in 5 million.”