Newborn Screening Follow-Up in a Public Health Emergency –Hurricane Ida
By Louisiana Department of Health (Cheryl Harris, Jantz Malbrue, Ngoc Huynh)
This is a testimonial of when staff from Louisiana’s Department of Health, Office of Public Health experienced an emergency situation with newborn screening (NBS) and Hurricane Ida. This account is based on an interview with Cheryl Harris, Jantz Malbrue, and Ngoc Huynh. Cheryl is a Program Manager for the Office of Public Health, Bureau of Family Health, Children’s Special Health Services Program, which encompasses the Genetic Diseases Program, Newborn Screening Program, Children with Special Health Care Services Program, Clinical Services, and Childhood Lead Poisoning Prevention Program. Jantz works in the Genetic Diseases Program, newborn screening follow-up manager, works with specialists regarding any of the genetic disorders and works with the Sickle Cell Program and their community-based partners and clinical providers. Ngoc Huynh is an Epidemiologist Specialist with the Bureau of Family and is responsible for data analysis with the Genetic Diseases Program.
Hurricane Ida formed as a tropical depression in the Caribbean Sea on August 26, 2021, and it rapidly increased to a hurricane the next day, before making landfall over Cuba. It then strengthened to Category 4 as it moved towards the Louisiana coast. On Friday, August 27, the mayor of New Orleans and other surrounding city and parish leaders called for a voluntary evacuation, and for citizens to otherwise hunker down. A mandatory evacuation was not called earlier because there was not enough time. A landfall of greater than 72 hours is required for a mandatory evacuation. Therefore, because the regional officials didn’t have enough time, they requested a voluntary evacuation versus a mandatory evacuation.
Ida eventually made landfall near Port Fouchon, Louisiana on August 29, 2021 as a Category 4, with winds over 150 miles per hour. It also happened to coincide with the 16th anniversary of Hurricane Katrina’s arrival, so it was very daunting.
It greatly impacted our follow-up staff for newborn screening. Most of the damage occurred in Region 3, in the south bayou area of the state; Region 1, which is the New Orleans area and Region 9, which is the north shore area of the state. These areas suffered the most damage, and most follow-up staff primarily reside in these areas. Most of the staff had to evacuate outside of their residential area, electricity was lost in the city for two weeks (or longer), there was limited to no Wi-Fi and the main IT servers for state programs were inaccessible at the time.
“It’s always daunting in Louisiana to hear of a hurricane.” We’ve adjusted to looking at the category level of a hurricane and determining the concern level, but lately, we’ve been experiencing intense hurricane 3, 4, and sometimes 5 – Ida was almost projected to be a 5 at some point –your first thought is: am I coming back to anything?
“(The) first priority is always making sure you’re safe, your family is safe, your loved ones…anybody you care about – you’re safe. And once you are at your safe place, it’s next ‘what’s the impact of the storm going to be? Am I gonna go back to anything? Am I going to have to start over?’”
Once you are in your safe place, then you go back to what needs to be done for work so that we could continue to provide newborn screening follow-up. Our main two concerns were for the families that were in those impacted areas. Where were babies being delivered and did they have a newborn screen? Secondly, for all infants born in our state during that time, we had to make sure that we had the connections and the resources to continue to report out abnormal cases to the affected infants’ physician or make sure that the parent was contacted for awareness. Our state newborn screening lab is housed in Baton Rouge, which is about 60 miles west of New Orleans. The lab was still able to operate and report results to us and then we had to make sure we could contact providers and families as best as possible to report abnormal cases.
- Do I have internet service?
- We’re evacuated to a hotel, is the hotel Wi-Fi going to hold up? What are the confidentiality issues for using the hotel Wi-Fi?
- With cellular data, if you don’t have an unlimited plan, what are the implications for that? Are you going to be able to afford continuing to put additional funds on your phone?
- As a supervisor, you communicate with your team to ensure that everybody was out safe and okay.
- Once you know that everybody had a safe place, you assess who had what information and resources. For instance, our person who handles ordering metabolic formula was back at home without electricity and Wi-Fi. Fortunately, she had a generator which allowed her to charge her phone and was able to text out to coworkers and to families.
Luckily, or unfortunately, for us, we deal with these situations fairly often. We had things in place so that we could still operate and get to the necessary resources and files that we needed to continue to do our jobs.
In 2013, we took action to develop a continuity of operations plan (COOP) specifically for newborn screening, as well as for the delivery of metabolic formula for patients with metabolic disorders. The COOP provides information on abnormal screening reporting, laboratory procedures, follow-up and case management, pharmacies, clinics across the state and ordering of newborn screening forms. For each of those, we outlined what information and resources it took to continue operations and essential functions during an emergency.
As the effects of Hurricane Ida progressed, we looked at those essential functions and determined whether or not any modifications needed to be made. For example, for follow-up and case management, which entails reporting and monitoring of abnormal newborn screens, we used our personal cell phones, the lab texted the follow-up staff when an abnormal result was released, and we contacted families directly when a primary care provider couldn’t be located. We made different modifications as needed to ensure that those infants with abnormal screens received follow-up.
We also had the COOP in place with the COVID-19 pandemic having an impact on our daily lives and our schedule in the office. We used a lot more of our resources remotely, and had plans in place on how to communicate, using Wi-Fi, and cellular services. During the pandemic we were also able to move a lot of our laboratory resources – the way we communicated with our partners and the way we were able to get newborn screening results – to a remote situation.
Additionally, in 2020, the Southwestern portion of state was damaged by Hurricane Delta, and we were able to put a lot of our COOP plan into play at that time. We reviewed our resources by gathering a list of the different birthing facilities throughout the state and identifying emergency contacts for each facility. So, when we experienced Hurricane Ida the following year, it was a little bit easier to grab those resources and be able to jump into action to make things go as smoothly as possible. It was a little bit quicker than if we hadn’t had those experiences before or had a good plan in place.
“After (the) storm, we ran a report for babies born in August, before the storm, to the end of September. We wanted to match those with our vital records registry.” We matched infants born August 26, 2021 – September 30, 2021. We had 365 infants with a Louisiana address who seemed to not have a valid newborn screen. When we reviewed the data, 215 of those infants were born in another state. Out of those 215, the majority (95) were born in Texas, and then the next highest (55) were born in Mississippi. For infants born in Mississippi, many of the births were in border cities – right across the Mississippi River from Louisiana which is typical for mothers living in those border areas anyway. For the remaining infants who did not have an out of state address or delivery, we sent the families a letter to notify them that we had no indication that their baby had a valid newborn screen, and to make sure that they spoke with their pediatrician about having a screen done.
Many families weren’t able to evacuate due to a lack of financial resources. We had to make sure they were aware of the need for a newborn screen. During emergencies like hurricanes, doctors’ offices might shut down for weeks. Even though a hurricane may have landfall and greater impact on one area of the state, it might impact the infrastructure of the whole state. If there is no access to care, it especially impacts a lot of families with low incomes, who tend to be mostly minorities in Louisiana. If they don’t have access to a physician’s office or a clinic that they normally attend, they may not seek out other resources or services like newborn screening.
“(We) say all of that to say that because…we made the effort to look at who was born during that time and whether or not they had a newborn screen, and at least inform the families that they didn’t have a record…that lends itself to making sure that all infants have a valid newborn screen.”
For those families who were displaced and that needed a valid newborn screen, repeat screenings or access to metabolic or special formulas, we were able to connect and guide with partners to provide resources in other areas that would be able to assist them. For example, we have developed a system to deliver formula to a patient’s physical location. We’d make sure the families still had access to services and resources, even though they may not have been receiving it at the normal place for primary care or where they would normally receive that newborn screen through the hospital.
Going forward, what we’re trying to do now is to make a lot more information web-based. One of the bigger issues during Hurricane Ida and during previous disasters, is access to our state server becoming inoperable. We’re learning to use web-based platforms for data management case surveillance, policy and procedure manuals, newborn screening results retrieval and our COOP plan. We now use platforms, such as Moodle, Secure Remote Viewer, and Social Solutions ETO to access all of that information remotely instead of relying on the state’s server.
We’re working with our birthing facility partners to make sure if there’s a situation again where they may have to transfer critically ill babies and patients, that we have a means for connecting with them and we have an idea of where the facilities will transfer their patients during an emergency. We’re trying to eliminate a little bit more of the guessing game for us whenever we’re trying to get in touch. We improved internal communication and external communication between us, others in the office, our partners, laboratories, and our health care providers to make sure that we could continue to contact families, especially those with infants that needed immediate attention and resources as soon as possible.
“I think that a good takeaway is that every emergency is going to be different, but if you have a good, standard plan in place…a contingency for follow-up or if your staff … know who can back up for whom, that is beneficial. And just have some cross-training, so that if one staff person is affected, someone else can pick up their cases or whatever responsibilities they have…”
For one, just make sure you have your resources in place, like making sure staff have resources they need to work remotely such as computers, internet services, access to data systems or anything else they need. One great thing we do, is that every year as we’re getting closer and closer to the start of Hurricane season, we review our COOP and go over basics – making sure that everyone has access to their laptop, and that laptops are updated with all the necessary software and resources. We go over our list of contacts and information for not only ourselves and each other, but also our partners. We use that to be prepared so that way, when the situation occurs, you’re not feeling you’re having to scramble for everything
“It’ll start to feel a little more second nature, even though each situation is different and there is some stress involved, you’re able to feel a little more at ease once you’re able to ..take a deep breath and relax and know that you have everything at your disposal..and you’re just able to hop back into it and not necessarily have to figure out where everything is…”
Thank you for reading our story and sharing in our experience. “Hopefully it can help other states who may go through, not necessarily a hurricane but a tornado, a wildfire..anything. We’re ready to assist and provide any information needed.”
The story and summary above were collected as part of a project supported by the Centers for Disease Control and Prevention (CDC) of the U.S. Department of Health and Human Services (HHS) under grant number 5 NU38OT000296-05-00, a cooperative agreement between AMCHP and the Center for State, Tribal, Local, and Territorial Supports (CSTLTS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by CDC/HHS, or the U.S. Government.