Just six months after Amber Waldron’s son was diagnosed with a rare genetic disorder at birth, her family endured a traumatic episode that is now inspiring legislation in Georgia 12 years later.
On a trip to visit family just outside of Las Vegas, Waldron noticed that her newborn son, Jarom, had become nauseous and uninterested in eating. He threw up once, and then again, and by the third time, Waldron knew that she had reason to worry. Over the next few hours, Jarom would vomit a total of 13 times.
Waldron and her husband recognized that their son was experiencing something called an adrenal crisis, which the doctors warned them could happen when Jarom was diagnosed with congenital adrenal hyperplasia. This was the first time in Jarom’s six months that it had occurred, but his parents knew that it was very serious and that his life would be in danger if he didn’t get injected soon with a medicine the doctors had supplied them. But because they were never trained to give the shot, they waited for the EMTs to arrive to ensure that it would be done properly.
In the small town where they were staying, a volunteer service system had to transport them to a fully outfitted ambulance, but once in the presence of EMTs, the anxious parents were relieved that Jarom would soon get the help he needed. But after explaining the severity of their son’s condition and the urgent need for his lifesaving shot to be administered, they ran into a procedural dilemma that could have cost Jarom his life.
“They said, ‘we can’t give this to him’,” Waldron said. “And I was like, ‘you have to give this to him! He won’t make it!’”
But the paramedics were persistent that they could not administer the shot, and the Waldrons felt a sense of hopelessness come over them. They had never given the shot before and were baffled that the paramedics were unwilling to do it. In the panic and confusion, Jarom’s condition worsened. Waldron recalls his skin turning an ash gray color.
Finally, after a long, fearful delay, a paramedic bucked the procedural concerns and took it upon himself to administer the shot. Shortly after, Jarom’s condition improved, and he would make a full recovery in the hospital. But the paramedic had a clear message to the parents of the child whose life he had just saved.
“He said, ‘when you get to the hospital and they ask you who gave him the injection, you gave him the injection’,” Waldron said.
In Nevada, administering that lifesaving shot was not permitted under law. Had they been home in Georgia, the same would have been true. Now, 12 years after Jarom nearly lost his life, the Waldrons’ pursuit to change this aspect of law has nearly come to fruition.
Waldron and her husband Chris have teamed up with their local lawmaker, Rep. Dominic LaRiccia, R-Douglas, to pass a law in their son’s name. The bill, known as Jarom’s Act, would allow paramedics to administer hydrocortisone sodium succinate, commonly referred to as Solu-Cortef, to people with congenital adrenal hyperplasia if they are believed to be in adrenal crisis and the shot, which they always carry, is clearly labeled.
Paramedics in Georgia are bound by the Department of Public Health’s “scope of practice” guidelines that outline what they can and cannot do. Current guidelines make no mention of Solu-Cortef and personnel are not trained on its administration. Jarom’s Act would give explicit authority and training to paramedics to give the shot and provide protections from liability concerns that arise when giving medication that originates from an individual and not an ambulance.
The bill has passed unanimously out of the Georgia House and is awaiting a final Senate vote after a favorable committee report. For LaRiccia and the Waldrons, it is the culmination of a year’s long journey of explaining to those unaware of congenital adrenal hyperplasia why the bill was needed in the first place.
“I spent the first two years doing nothing but educating our members on what this disorder is and what type of an impact it has on individuals,” LaRiccia said.
Jarom has a severe form of congenital adrenal hyperplasia, which is a group of genetic disorders that are the leading cause of adrenal insufficiency in children. It hinders the adrenal gland’s ability to create important hormones like cortisol, which regulates the body’s response to stress and illness. As a result, those with this rare condition are at risk of experiencing an extremely severe and fatal condition called adrenal crisis when they encounter even minor injuries or illnesses.
Once in an adrenal crisis, an intramuscular injection of Solu-Cortef is the only way to reverse the condition. Families are supplied this shot and instructions regarding dosage and administration, but hands-on training isn’t provided, and new parents are often overwhelmed with information about a condition they had never heard of before. The inexperience of new parents combined with the inability of paramedics to give the medication can delay a Solu-Cortef injection by hours, and in an adrenal crisis, that can prove fatal.
According to a review in the Journal of Investigative Medicine, a procedural hang-up similar to the one the Waldrons encountered in Nevada led to the death of a young boy experiencing adrenal crisis, and it is estimated that one in every 200 episodes of adrenal crisis is fatal. Waldron believes the current policies put children like Jarom at incredibly high risk in situations that are out of their control.
“As of right now, if something were to happen and he was with us and my husband and I were incoherent, you know, what are they going to do?” Waldron said. “Nothing. Because they can’t.”
The family does what they can to educate as many teachers, coaches and others in Jarom’s life about what to do in the event that he goes into adrenal crisis, but as he gets older and more independent, more situations arise where there may not be someone around who knows how to navigate a critical situation. For that reason, the Waldrons have worked tirelessly to spread awareness about congenital adrenal hyperplasia and the need for Jarom’s Act to pass.
Waldron is thrilled that years of hard work are finally paying off, and she sees this legislation as a major step forward for the community of similarly impacted people her family has become a part of over the years. Since the bill was first introduced, she has followed its every move and is anxiously awaiting its final passage as the end of the legislative session draws near.
Jarom, who is a bit shy but highly active in sports and school, is more interested in smacking home runs or catching fish than the finer details of the legislative process. But his mother has enough enthusiasm for the both of them, and the family can hardly wait to celebrate Jarom’s Act becoming law.
“I feel better and safer knowing that this is moving forward and that if he stays in the state of Georgia that he will be OK,” Waldron said.