Get the latest from TODAY
The Osborn family of Spanish Fork, Utah, has had a heartbreaking year, losing five baby girls in the course of just over 12 months. But in the wake of their own profound grief, Jason and Clarissa Osborn are determined to honor their daughters' lives by helping others.
At Clarissa's 20-week appointment during her pregnancy with their second child, the Osborns received the news no parent wants to hear. "We found out that our precious baby girl had a heart defect called truncus arteriosis and a possible chromosome deletion syndrome know as 22q11," Clarissa told TODAY Parents. "We were terrified for the road ahead."
Truncus arteriosis is a condition in which a person only has one large artery instead of two separate ones to carry blood to the lungs and body, according to the American Heart Association. This disrupts the ability of the body to deliver oxygen to the lungs.
Baby Shanna Okay Osborn was born four weeks early on April 17, 2016, after Clarissa was life-flighted to the University of Utah Hospital in Salt Lake City. When she was just one week old, Shanna underwent open heart surgery to correct the abnormalities of her heart. "Everything went as well as it could go for a tiny, 5-pound baby," said her mother.
The Osborns were able to bring Shanna home when she was one month old, though she still needed oxygen and a feeding tube. "Despite all her attachments, we were able to love on her and enjoy her sweet disposition," said Clarissa.
Unfortunately, when she was just three months old, the Osborns woke up to a cry from Shanna they had never heard before. "She was also very cold to the touch, and we knew we needed her to see a doctor as soon as possible," said Clarissa. But before they could leave the house, Shanna stopped breathing, and Jason had to start CPR on his daughter.
"I never thought I would ever have to call 911 and hand my baby off to paramedics in hopes that everything would be OK and that they would resuscitate her," said Clarissa. "Hours later, we left the hospital empty-handed. I was so afraid of going home to all her things, knowing she would not be there." Clarissa said it broke her heart to tell their little boy, Carter, now 4, that his little sister went to heaven.
Just months later, the Osborns were pregnant again — this time with quadruplet girls. "We were so excited, worried, and terrified all at the same time," said Clarissa. "We couldn't wait to meet them and have them with us in our home."
Though the pregnancy went well, and the family was optimistic, Clarissa went into labor early, and on June 11, 2017, babies Kylie, Savannah, Ellie, and Lexi were born at just 23 weeks by emergency C-section. "We met our baby girls weeks too soon," said Clarissa. "At 23 weeks, a baby is so underdeveloped."
Though the girls fought to survive, the Osborns had to say goodbye to each of them over the next three days due to the underdeveloped lungs and brain bleeds from their premature births. "We were devastated yet again," she said.
After Shanna passed away, the Osborns started the Shanna Kay Osborn Foundation to help students who have survived heart defects like Shanna's pay for college. "We always dreamed of Shanna growing up and attending college despite the obstacles and struggles she would have due to the chromosome deletion syndrome she had," said Clarissa.
"Because she would no longer have those obstacles and struggles, we thought it would be very rewarding to see others with her condition that would persevere and accomplish the difficult task of graduating high school and going on to higher education."
This year, two $500 scholarships were awarded through the foundation, and the Osborns hope to do the same next year.
During Clarissa's pregnancy, the Osborns had received four sets of baby and nursery items in a surprise baby shower from a television show, "Random Acts." After the quadruplets passed away, they donated the items to another organization that supports families coping with congenital heart disease, Intermountain Healing Hearts.
"From that, we were able to see the girls' things touch and help struggling families. So far at least five families will benefit from the donations," said Clarissa.
Now, the Osborns are taking things day by day, she said. "Some days can be very difficult, while other days are bearable. We've really realized how much we have been blessed with. We have a little boy who lights up our lives, and although we always wanted a big family, he is what we have. He is our everything."
They could not get through their challenges without the support they have received from people all over the country, Clarissa said. "People who we have never met reached out to us through our Facebook page. Their messages and kind words have helped us understand that we are not alone and this makes us want to help more and more people."