By: Olivia Lounsbury, Clinical Research Coordinator
A parent should never have to watch their child die of sepsis after they’ve been asking repeatedly for help, screaming to be heard, with no response.
“Why is her fever so high?”
“Why does she have a rash all over her body?”
“Why does she look confused?”
“Can you please check her lab results again?”
“I think something is wrong. Please help.”
These questions quickly turned into:
“Why didn’t anyone help her?”
“Why didn’t you look at her labs”
“Why didn’t you listen to me?”
“Who can I talk to?”
“I don’t want to get an autopsy for my little girl.”
And were met with:
“Why do you need her medical record?”
“What are you going to do with it?”
“This cannot happen to anyone else.”
Gabby’s Battle of Sepsis
Gabriella Galbo was an immensely vivacious little girl, with a smile like sunshine and a heart like gold. Gabby died of preventable causes. Numerous preventable causes. One after the next after the next after the next. The systems that were supposed to keep her safe and bring her back to health were established on an unreliable, fragmented foundation with no checks and balances and certainly no person-centered culture of safety. Gabby’s full story about how sepsis took her life is here, as told by her father, Tony.
Time and time again, her worsening condition of sepsis was apparent. She was unrecognizably swollen due to the medication errors. Her lab results showed 18 out of 25 abnormalities, with the remaining seven on the cusp of being abnormal, despite her discharge record tattooed with “labs are unremarkable”. She was confused, in pain, disoriented, and off balance with a fever that would not subside. Any one who would’ve evaluated Gabby as an individual, who would’ve paused for a moment to look at her, would’ve seen it. Gabby was not okay.
Why was Gabby’s condition repeatedly dismissed in six out seven days she was brought to a pediatrician and to the emergency department?
It wasn’t long before this once bright, powerful little girl was gone from the world, taking so much positivity and light with her. With a strong instinct prompting the inquiry into investigation, Tony and the rest of Gabby’s family asked for her medical records, not anticipating the treacherous uphill battle that would ensue.
The Hospital’s Lack of Foundation for Safe and Reliable Care
Much like the dismissive nature they had experienced during Gabby’s final days, a similar dismiss to his concerns was obvious when searching for her records. The significant effort to keep the records sealed was proof enough not only that something had gone horribly wrong in Gabby’s care, but that the hospital lacked a foundation for safe and reliable care.
Pouring through the records and piecing together the story, the repeated mistakes showed that it wasn’t just a poor sepsis protocol or a broken medication management system. The standard of care was nonexistent. With three computers allocated for different purposes in his research, he began to understand how the smallest, preventable errors culminated into an irreversible fate. It would take more than siloed, population-specific performance improvement projects to ensure that this never happened again.
Advocating for Gabby
Tony began advocating for legislation immediately.
“The extent of my policy and legislation knowledge began and ended with my high school government class. But it mattered that I learn as much as I could to push this forward.”
His first efforts looked quite similar to what he had experienced in the hospital. Person after person after person pushing him off and referring him to the next. Representatives, police officials, and investigators didn’t have an answer for him.
His Congressman finally provided the pragmatic advice to make every attempt to pass his legislative efforts in two or three states before pursuing federal action. Tony took his story to his state representative, who then helped him contact the state Senator. After hearing Tony’s story, the movement to implement these sepsis protocols in Illinois was underway.
Lack of Knowledge Around Sepsis and the Healthcare System
The biggest barrier he faced in his journey to legislation was the utter lack of knowledge around sepsis and the severity and range of impact of these issues within healthcare. His state Senator was appalled at his story, but still doubtful.
After Tony did his own research and reported back to the Senator, the Senator returned to Tony the next day frightening, shocked, and bewildered that Tony’s story wasn’t a fluke.
Reevaluating Standards of Care
While these sepsis protocols are important, these medical errors won’t decrease until the standard of care is significantly reevaluated and patient rights are pragmatically applied, instead of just written down and acknowledged as a ‘nice touch’. Healthcare organizations need to stop improving in pods around one population- or disease-specific issue. Regardless of how seamless a population-specific improvement plan is, if it is developed and implemented in a system without a culture of safety, person-centered care, holistic method of evaluation, model of high reliability, and a process for sustainment, even the best population-specific performance improvement projects will still lend to medical error.
Responsibility and Teamwork
A pilot has a personal interest in ensuring that everything is checked off and functioning properly before take off, as this poses a risk of losing his own life if not. This personal accountability is significant in ensuring that everyone is on a level playing field and has their head in the game. Additionally, when a plane crashes, it is catastrophic, monumental, and the event is known immediately by the general public.
When a hospital makes a mistake, instead of an avalanche, it’s a dripping faucet and, as such, can be more easily overlooked by the general public. When dealing with silent killers like sepsis, legislation is crucial to ensure that everyone is on the same level playing field and that people are held to the same standards, regardless of the amplification of media attention.
Tips on Advocating Your Voice
Below are tips from Tony for using your voice to prompt tangible action and to ensure policies are in place to prevent medical errors, like those experienced by Gabby.
How to Contact Your State or Federal Legislator
- Investigate the type of legislation you are proposing. See if there is similar legislation already in your state or federal government.
- Look up your state/federal representative/Senator. Do your research on the appropriate person to contact, whether state representative, state Senator, U.S. congressman, and/or U.S. Senator. Educate yourself and know the difference in state and federal legislators and government.
- Call offices in the state capitol city, district offices for state legislators, offices in Washington D.C., and all district offices for your legislator. It will be repetitive in telling your story over and over to many different aides but you have to grab the attention of as many as you can.
- Ask to talk to a legislative aide who works in health policy. Tell them your story and why it is important for such legislation. Ask for an in-person or virtual meeting. It is very very important you build a relationship with that legislative aide. Be well-educated and well-versed on the topic you are bringing to light to your legislators. You only get a small window to make your case on why such legislation is needed. It may take a few meetings to get them to understand the breadth of the issue as well as you do. Expect that you might be traveling to meet with aides in district offices, state capitols, or even Washington D.C. Your physical (or virtual) presence sends a very loud and clear message.
- Ask for a meeting with your legislator. It is very important that they meet you and speak to you face-to-face. Look them in the eye and lead the conversation. I’ve met many legislators that try to sidetrack you and tell you that it will be difficult or this type of legislation isn’t needed. Be firm and show them statistics and evidence letters of support from experts. Don’t be afraid to ask for letters of support from anyone and everyone. Set up calls with CDC, CMS, state health departments, hospital associations etc.
- Once legislation is written, be involved in the process and ask to review the legislation. Don’t be afraid to correct or add things they left out.
- Once legislation is introduced, if it is state legislation, call both House and Senate health committee members and ask them to sponsor and support the legislation. Do the same for federal legislation. I called every member and wrote letters to both the Ways and Means committee and the Energy and Commerce committee.
- Be prepared to testify in both the House and Senate health committees on why such legislation is needed. I’ve testified in Illinois and Indiana and will testify in Washington D.C.
- The most important step is to be firm. Don’t be afraid to keep calling anyone and everyone if they haven’t called you back when they said they would. Show them you will not go away. You’re here for the long haul. Remind them that they work for you and the people. Don’t be afraid to call legislators that don’t represent you in that district or other state legislators.
Gabby’s law, SB2403, was signed into law in Illinois on August 18, 2016. Federally, Gabby’s Law, HR7514, was introduced in the House on July 9, 2020.
For more information on the challenges of sepsis and septic shock, please click here.
Learn about Dr. Konrad Reinhart’s journey in establishing the Global Sepsis Alliance and initiation of landmark studies on therapeutic approaches in sepsis.
Learn more about Karen Moore’s story on becoming septic and how her life took a drastic change.