Judd’s Legacy - Itching for Awareness

By Ashley Parker

There is an old Proverb that states, “It takes both rain and sunshine to make a rainbow.” I’m here to tell you that Judd’s Legacy is the rainbow knit together from tearful heartache mixed with determination and love. Before sharing all the extraordinary things that Judd’s Legacy has done for families all over and telling you about a rainbow that was built, I must take you back a little over three years ago to the rain…, and, believe it or not, it was not literally raining October 27, 2018, the day Judd actually arrived, even though it would have matched the mood, especially for my sister Allison and her husband, Brandon Gardner. The day before Judd arrived, the waiting room was filled with family and friends. Loved ones trickled in and out, and there were tears. Allison had noticed no movement from Judd early the morning before. As Brandon drove Allison to the hospital, they had an overwhelming feeling of dread, only to be confirmed by an ominous ultrasound. Just 6 days before a scheduled induction, Judd’s little heart was not beating.

Doctors were aware that Allison was high risk. She had been diagnosed with Intrahepatic Cholestasis of Pregnancy (ICP), and the only true cure is early delivery. ICP develops in pregnancy, typically the 3rd trimester, and a pregnant woman’s body doesn’t rid itself of bile acids and toxins, therefore found in her bloodstream and ultimately can poison an unborn baby. Labs testing for ICP are drawn and sourced out to other locations. No location in SC ran this test in 2018, even though every medium to large size hospital in the UK does. Tests in the US can sometimes take an excruciating 7 days to get results back. A pregnant woman’s bile acid level is the determining factor in life or death for unborn babies, therefore it is crucial for doctors to get test results quickly. While in the hospital, results came back from Allison’s last blood draw taken the previous week. That was too late. There had been a spike, a spike that had a detrimental effect. As a result, they lost Judd.

And the rain didn’t stop there. Reality started to set in, waves of overwhelming sadness, anger, and fear would swoop in and steal all the joy from these soon-to-be parents. In that hospital room, I remember it so clearly, with our families surrounding Allison and Brandon, little glimmers of sunshine started to be seen through the tears. What could we do to make this baby boy count? Promises were made to support Allison and Brandon as they could begin to turn into some sunshine. We knew without a doubt it would be hard, but had no idea how rewarding the journey would be, or exactly what would happen next.

Later, Allison is quoted, “Judd didn’t get a chance to pave his path and make his own legacy, but I am determined to find a way for him to still do so, and I believe this is it. We are going to save as many babies as we can by sharing our story and bringing awareness. And as for us, we will hold Judd in our hearts until we can hold him in heaven.” And that is how Judd’s Legacy, their nonprofit foundation, was born. They saw a need: A faster turnaround for bile acid testing. As noted previously, knowing these levels help determine the best time to deliver. Too soon of a delivery has potential problems and too late has others. This was a time for change and, even in the midst of grieving, the Gardners set to work, turning lots of negative energy and idle time into spreading their story.

Allison was interviewed and spoke to various organizations. Showing our support, my other sister, Lindsay, and I also rallied together, spreading awareness of ICP, and forging forward with the hopes of bringing testing locally. We all shared the story over and over, informing others of its importance and impacts on many families. In simply sharing, so many babies have been saved. Soon-to-be moms reached out for advice when they had symptoms (itching of the hands/feet, dark urine, right upper quadrant pain). Allison was quick to guide them in the right direction and push testing when others felt there was no need.

During this time, Judd’s Legacy began hosting the annual Boo Run. This 5K is held in Gaffney, SC during October in memory of Judd with family, friends, and supporters. All proceeds go to Judd’s Legacy and its fight to bring awareness and faster bile acid testing home! This past October there was a big announcement from Dr. Berry Campbell with Prisma Heath. Dr. Campbell happens to be a Newberry College alumnus just like Allison and Brandon and was a key component in the start of a new movement. He was the first to place a pin in a map to represent the first bile acid testing laboratory: Greenville’s Prisma Health. This turnaround time is not 7 days, or 5 days, or even 1 day…. Turnaround time for this test which, with the right materials, can be performed in any typical hospital lab, is 3 HOURS! How amazing is that? Prisma Health Columbia is following suit soon, as this is already in the works. How is that for a rainbow?

So with this rainbow that was built with heartache and tears mixed with love and determination, Judd’s Legacy along with our donors and continuous supporters, have accomplished the first steps of their mission. ICP can’t be cured at this point, but what we can do is test to decide when bile acid levels are reaching dangerous levels. This is the start of something big that families need. The Gardners saw a need and selflessly poured their hearts into helping others so that no one will have to endure the same heartache they have. For more information or more of their story, please visit https://www.facebook.com/juddslegacy.