When Justin Frankford’s baby fell ill, he didn’t have to think about it. If no one else could help her, he would donate his own organs to save her life. But as the doctors readied their patients, they received an emergency call that changed everything.
Unlike some members of the animal kingdom, humans are born dependent on their parents. For the first two months after their birth, infants can’t do anything for themselves. Their bodies are still developing, so as a result, they’re vulnerable to illnesses and health conditions.
In fact, a baby’s fragility is just one of the reasons why new parents are so understandably anxious and protective. But knowing this doesn’t make it easier when the worst happens and your baby experiences problems. That was the harsh reality the Frankford couple faced.
Justin Frankford and Amanda Dowdy were lucky in love when they found each other at a young age. They were both raised in Carlinville, Illinois, got together in high school, and their partnership endured. In many ways, the couple experienced a relationship like something out of a movie.
Dowdy married Justin in 2014 to become Amanda Frankford. They had a baby together the next year. They called their daughter Braylee, and it looked like the Frankford’s happily ever after would continue its trajectory. Unfortunately, that wasn’t to be.
It overjoyed Amanda and Justin to start a family together. Their elation was diluted with fear, though, when Braylee showed signs of illness shortly after her birth. Initially, Braylee’s skin changed hue, which is a textbook symptom of a condition called jaundice.
A greenish or yellow tinge in the skin and eyes characterizes jaundice, and many things can cause the condition in adults. The problem shouldn’t be ignored, but it’s not always a sign of an underlying chronic health issue. It’s even more common in babies.
When the illness occurs in infants, experts refer to it as neonatal jaundice, and it’s a common ailment. Approximately half of all newborns get jaundice in the first week of their lives. The number is even higher in premature births, of which 80% experience it.
Doctors can treat infant jaundice with phototherapy, which exposes the baby to particular light sources. Alternatively, they may just decide to increase the baby’s feeding routine to combat the condition. In more extreme cases, the young patient may require a blood transfusion.
Braylee’s doctors at St. Louis’ Children’s Hospital diagnosed her with neonatal jaundice. As such, they didn’t believe she was in any danger. But as time went on, their little patient’s health continued to worsen. It soon became apparent there was another cause to baby Frankford’s distress.
Not only did Braylee’s skin retain its unnatural coloring, it actually became worse. Then she started displaying symptoms that regular neonatal jaundice wouldn’t explain. More specifically, the baby’s abdomen began to swell to worrying proportions, so her doctors quickly searched for the cause.
Then on February 3, 2016, hospital staff discovered what ailed their tiny patient. They revealed that an uncommon disease called biliary atresia (BA) had caused her decline. BA is significantly harder to spot, considerably more dangerous and a lot rarer than common infant jaundice.
Specialists sometimes call BA progressive obliterative cholangiopathy or extrahepatic ductopenia. It only occurs once in every 10,000 or 15,000 American babies, but these figures are significantly more common in East Asia. There, the condition afflicts one child in every 5,000.
Some babies are born with BA; others contract the disease due to an infection that occurs in the liver shortly after the enter the world. Regardless of how the illness manifests, the results are the same: the suffering infant appears to have jaundice.
That’s because BA occurs when a baby experiences problems in their liver. The organ produces an acidic substance called bile, which is supposed to collect in the body’s gall bladder. When we eat, bile dissolves our food as part of the natural digestive process.
Unfortunately, if there’s something wrong with the liver’s bile ducts, it causes complications leading to BA. The ducts are either too narrow for the bile to effectively pass through or something blocks them. In some cases, the bile ducts may be missing completely.
With baby Braylee, her doctors discovered she had no gall bladder at all, which led to bile filling her body. With no outlet for the fluid, it had a detrimental effect on her health and endangered her life. As a result, the specialists leapt into action to find a stabilizing solution.
Doctors needed a way to give the bile an outlet and return the baby’s digestive process to normal. The situation was so desperate for Braylee that her doctors had to essentially rewire some of her internal organs. With that in mind, they performed an emergency operation.
Surgeons attempted to use Braylee’s intestines as a temporary solution, and attached them to her liver. They intended the process to vent her excess bile and save the little girl. Unfortunately, it was unsuccessful. Her stomach continued to swell.
Furthermore, Braylee’s condition had irreversibly damaged her liver. Hospital staff informed the Frankford parents that their daughter couldn’t leave without a lifesaving liver transplant. What’s more is that Braylee’s condition was so serious, the hospital fast-tracked her to the transplant list.
Thankfully, the Frankfords weren’t facing their situation alone. A friend of the family set up a crowdfunding page to help with the inevitable medical expenses Braylee accrued. Although the movement didn’t reach its $15,000 target, it did achieve $12,375.
But getting Braylee on the transplant list and finding the financial means for her operation was only half the battle, as the Frankford’s soon found out. Amanda wrote as such on her Facebook page on May 17, 2016. “Before having Braylee, organ donation wasn’t something I thought about often,” she reported.
“We always think, ‘That will never happen to me,’” Braylee’s mother continued. “I knew that I was signed up to be an organ donor, but I didn’t really know what that meant when I signed up. Of course, I knew this meant they would take my organs if I died.”
However, Amanda explained that donating organs is a far more complicated process than she had ever considered before. Indeed, she revealed that donors on the transplant list also need a significant amount of luck. The number of people waiting for a donated organ are far higher than she realized.
Amanda continued, “Did you know there are thousands of families just like ours waiting in hospitals for an organ donor? We spend hours praying, begging, crying, and hoping for an organ to come up so that our daughter can live a longer life.”
“At six months old, we aren’t ready to watch her get so sick that she passes away,” Braylee’s worried mother wrote. “The only way this is possible is through organ donation.” It’s no wonder that people hail donors both alive and deceased as heroes.
In addition, Amanda implored people to become donors. “Please, I beg all of you to sign up to be an organ donor,” she said. “I want everyone reading this to live the longest and healthiest life, but if something happens to any of us then let’s be prepared.”
And living people can donate organs, too. According to the American Transplant Foundation, in 2017 nearly six thousand people on the transplant list died before they could receive an organ. And not only could those deaths have been prevented, but the need could have been filled by a living donor.
With this in mind, as Braylee’s situation became more desperate, her father Justin underwent organ compatibility tests. In the absence of another donor, he offered up a portion of his own liver for his daughter. Finally, the Frankford fortune returned. Justin was a match.
Braylee’s time grew shorter, and still no other donor was available. As a result, doctors prepped Justin for surgery. However, just when he was about to undergo the procedure, the hospital received a call that ground proceedings to a halt.
Amanda announced the news on a Facebook page dedicated to Braylee’s fight against BA. “We got a donor,” she wrote excitedly on May 20, 2016. “Nothing like answered prayers at the last minute! Justin was ready to go in to surgery and is getting discharged now so he can come be with us at Childrens.”
Surgeons rushed Braylee into liver transplant surgery, leaving her anxious parents with nothing to do but wait. Then, after ten long hours that must have felt like a lifetime, they received some news. The doctors had finished Braylee’s operation, and it was a surprising success.
“They just came to see us,” Amanda wrote of the surgeons, “and told us she is doing so well they were already able to take her breathing tube out. She is fiercely sucking on her pacifier! Our little fighter baby! We are oh so excited to see her!”
In the days that followed, Braylee’s health improved dramatically. Her yellow palor rapidly fell away to a more natural skin color, and she showed every sign of a textbook recovery. Barring some trivial issues, the little fighter’s health was returning.
Braylee’s parents borrowed a phrase from Shakespeare’s A Midsummer Night’s Dream to describe her. They often referred to the quote, “And though she be but little, she is fierce.” It’s an apt summery of their tiny daughter’s tenacious fight for life.
Braylee’s donated liver had come from a deceased woman called Carrie Lewis, but Carrie’s passing saved two people. Not only did the organ give Braylee a new lease of life, part of it also went to an adult patient. On August 28, 2016, the Frankfords got the chance to thank their donor’s family personally.
“Our day was nothing short of amazing,” Amanda wrote on Facebook. “We got to meet the wonderful family that our donor came from. They were extremely sweet and we loved being with them today. The Lewis family is extremely talented and plays music as a family.”
Amanda continued, “They even played for us and were amazing. Braylee loved dancing to their playing and singing. Everyone should look them up and check out the music from the Bob Lewis family. Their kids also play and have their own bands as well.”
Braylee has grown a lot in the intervening years, and much has changed for the Frankford family. One of the biggest adjustments is that Braylee is now a big sister! In 2018, Amanda gave birth to another little girl called Oaklyn.
“I also must add that we had NO hospital stays this year,” the second-time mommy reported on December 21, 2018. “What?! Now that is something to celebrate! The last five years have been exciting to say the least, and we are definitely blessed. Can’t wait to see what 2019 will bring for the Frankfords.”