I’m very excited to share May’s Cause Warrior’s story with you. Jill Levy-Fisch is the type of person who counts her blessings and then gives back ten fold. I love a great story, and hers is amazing. Please read about her journey from crisis to advocate and support her in her efforts to bring change and save lives.
Amanda: All of my Cause Warriors so far have been inspired by a personal event in their lives. Can you share with the readers what changed you from ordinary citizen to “Cause Warrior?”
Jill: Several members of my family were born with SCAD, an inherited metabolic disorder which can wreak havoc if left untreated. Unfortunately, none of us were screened for the disorder at birth. While my father and I both had seemingly inexplicable health problems, they were not as severe as those of my youngest son, who became extremely ill in his first year.
We embarked on a diagnostic odyssey across the country for over 2 years to see specialists and more than a year of failure to thrive and life-threatening health crises before we were finally able to obtain a diagnosis. During this time, he had a feeding tube placed in an effort to overcome the failure to thrive while we were looking for answers. It was only through his diagnosis that we were able to learn that my oldest son also has SCAD, as well as myself and my father. We were blessed that through treatment, my youngest son has been able to have a healthy childhood and has not suffered any long-term disabilities due to the lack of treatment for his disorder in his first two years.
However, I have met countless families who either lost their children to unscreened, and therefore untreated, disorders, or whose children have suffered severe mental and/or physical disabilities. These deaths and disabilities were completely preventable, if only the children had been screened at birth and treatment started early. I could not in good conscience sit back and let another child die or face disability from disorders that are treatable if caught at birth through newborn screening. I also could never allow another family to spend years searching for answers, I knew I had to take action.
Amanda: The Save Babies Through Screening Foundation was your expression of love to help save children’s lives and help parents. How did you take that from an idea to a reality?
Jill: Fourteen years ago, ten-day-old Tyler Wayne Mize died because no one knew that the formula he was being fed was, in fact, killing him. The newborn screening test that would have let his doctors know about his life-threatening condition was grossly mishandled. Every safeguard that had been put in place to protect Tyler failed him. His parents, Dallas and Tera Mize founded the Save Babies Through Screening Foundation to ensure that what had happened to them would not happen to other families.
Upon learning of our youngest son’s diagnosis, I spent hours on the internet looking for information about his disorder. This was how I learned that if he had been born in a state that was performing the screening for SCAD, he would have benefited from early diagnosis. We wouldn’t have spent years looking for answers. I then began to research newborn screening and came upon the Save Babies Through Screening Foundation (SBTS). I learned that they were the only national non-profit organization solely dedicated to the advocacy of newborn screening, and I quickly joined as a volunteer advocate. This was 10 years ago, and I have been dedicated to the Foundation ever since, rising up through the ranks first as a volunteer, then as National Director of Education and Awareness, and finally becoming President several years ago.
Amanda: What are some of the accomplishments The Save Babies Through Screening Foundation has made since its inception?
Our greatest accomplishment has been increasing awareness of the importance of newborn screening, both to expecting parents and the medical community, though we know there is a long way to go. We have created pamphlets explaining newborn screening, why it is important, how it is done, and what parents should know. The pamphlets are used widely throughout the country in pediatrician’s and obstetricians offices, as well as hospitals. In addition, we have created the awareness raising film “One Foot at a Time”, a film which shares the experiences of parents and expert views on newborn screening. We are very proud of this film, which is now being used by the State of California as an educational tool, as well as by other States, hospitals and public education organizations across the country. In addition, the video is being used in many different parts of the world.
We have developed a website, www.savebabies.org, which is designed to be a comprehensive resource for expecting parents, parents of children who screen positive for a disorder, and the medical community. We feel that there is a wealth of information available through this website, helping parents make informed decisions about the health and well-being of their babies, and helping the medical community find information to educate families. We are always available to guide families through the process and answer any questions as in addition to email contact, we have a toll free number that is answered by a family who has been touched by newborn screening. We truly value the interactions we have with the public.
We are also proud of our network of advocates, made up of parents and health care professionals who care about newborn screening. We have been able to mobilize our network to call state legislative and governing bodies to advocate for at risk newborn screening programs, as well as to thank state governments who have added new disorders to their state screening panels.
I’d also like to mention that we were intimately involved in the writing and passage of the Newborn Screening Saves Lives Act, an act which passed through Congress and was signed into federal law in 2009, funding public education initiatives and improving screening throughout the country.
Amanda: You’ve done an excellent job of providing referral information for families facing a diagnosis on your site. What have you learned about collaboration and partnerships in your advocacy work?
Jill: We have learned that it is so important to be inclusive and to work with a wide range of stakeholders to achieve the ends of saving babies through screening. Parents are very passionate, for example, about working to add disorders to screening panels, but there is much to consider when determining whether or not a disorder can feasibly be screened at birth through existing technology and systems. By keeping actively involved with the work of the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children and by seeking the views and opinions of state screening labs and state screening committees, as well as parent advocates, we strive to maintain a balanced voice.
Amanda: Where do you want to take your advocacy work, how do you want to grow? How can people reading this interview help you succeed in your important mission?
We always say it takes a village to bring about change. It is vitally important to our mission that we all come together as one voice. We want every baby to have the healthy start in life they so richly deserve. We want more families to join us as we look to have new screening tests added to the core panel of disorders screened and, in turn, to advocate at the state level to ensure not too much time passes before those new disorders are added to state screening panels. Time is of the essence. We need to be the voice of our children, and this can only be accomplished when people come together with that common goal.
With our recent partnership with World Solutions Against Infectious Diseases (WSAID) and working with groups such as Save Babies Through Screening Foundation UK, we strive to be a voice for babies all over the world.
Amanda: What is the one thing you most want the world to know about The Save Babies Through Screening Foundation and your passion for improved screening?
More than anything, we want parents to be educated about newborn screening, whether through personal exploration of the issues involved, or through public education programs, or through their doctor’s offices. Properly performed newborn screening is a crucial step in ensuring the health of a child from birth. We dream of a world in which parents actively advocate for their newborn to have high quality screening.
Much thanks to Jill and to February’s Cause Warrior Kristine who suggested Jill for our May Cause Warrior! These ladies are doing great work and changing the world for babies and new parents.