PHOTOS BY CHARLENE MANN PHOTOGRAPHY
Rochester Woman Online recently had the pleasure of sitting down for a question and answer session with the truly beautiful and inspiring Jennifer Johnson. Here is what she had to say, and boy was it amazing.
Q1 What made you choose your current career? What are your accomplishments in the field?
In 2011 I was pregnant with our second child when an ultrasound showed serious issues. Our baby had a birth defect called a Congenital Diaphragmatic Hernia (CDH). We quickly learned that half of the babies who have CDH pass away soon after birth.
The half that survives can expect major surgeries and months in the hospital. More testing revealed our baby’s CDH was severe. I went into mama bear mode by researching and reaching out to hospitals across the country, even visiting one that said we needed to move there for our baby’s care because she would need a long list of equipment and highly trained staff to operate that equipment. We brought that list of needs back to Golisano Children’s Hospital where we found out all we needed was right here.
What a relief! No one anywhere truly expected that our baby would survive but at least I knew that we would be giving birth in a place that had all the tools, the expertise and the dedication to try and pull off a miracle.
It worked. Our daughter Grace was born here in September of 2011. There were quickly many ups and downs when we almost lost Grace and had to make decisions about whether to continue her care or let her pass. As the staff cared for Grace, they cared for us too with constant kindness and honesty about what was happening. Seventy –two days later Grace was able to come home! She needed a feeding tube, oxygen and medications around the clock but she was home, finally with her big sister Avery. Grace was followed closely by many specialists here at the hospital and would need more surgeries but she continued to defy the odds with a big smile and bright blue eyes. A problem that stemmed from her CDH was tracked and monitored closely and had not been an issue at all… until it became a big issue during surgery in February of 2013. Grace survived a day long surgery but passed away as the PICU team tried their very best to save her.
I will forever be in awe of how each member of this hospital cared for Grace and us. It has been a pleasure to share her story and let everyone know what a special place this hospital is. So much went right with her care. But there was room for improvement and it has felt good to be able to raise these concerns with hospital leadership, be heard and see some changes happen as a result.
The addition of Dr. Pat Brophy as Chair of the Department of Pediatrics and physician-in-chief of Golisano Children’s Hospital in 2018 has been an incredible. He has said he values the role and insight of parents in the care of children and has proved this to be true by not only listening to my thoughts but seeking them out. I enjoyed my nine years as anchor and reporter at 13WHAM News (eight years at News 10NBC before that) tremendously and am so grateful for the platform it allowed me to tell patient stories, spotlight research and help with hospital fundraisers. However I was spending more and more of my free time on hospital-related issues. A year ago I wrote down all my ideas and goals and asked if it made more sense to work on these issues from a role within the hospital. Thus was born my role as the newly created position of Director of Family and Community Outreach at Golisano Children’s Hospital.
I have been floored by the support from our community for Grace, my family, other patient families and the staff here! The ways in which people help are creative and so touching. I’m excited to be able to help and support more of these fundraisers and let the public know how appreciative we really are.
I’ve also been amazed at how resource-rich our community is in terms of organizations that exist to help families in crisis – be it medical or otherwise. However, I think there is a growing acknowledgement in the community that we can do a better job of working together to help these individuals – that was my takeaway from being Grace’s mom. We were so thrilled when she came home from the hospital but it was a very stressful time. Not only were we as a family learning and managing her very delicate around the clock care but we were also having to find and manage a team of roughly 30 of her caregivers. It was like running a small company comprised of doctors, home nurses, therapists, medical suppliers, etc., not to mention the mountains of paperwork that came with it. All of these entities impacted one another but they weren’t set up to communicate with each other. Each change each person made had to be communicated to the group and that was up to us as parents to do (and any and all of the follow-up questions – many of them very technical). This was my family’s experience and I have heard similar stories from other families.
I’ll repeat, we have a very caring community and many resources ready to help families. I don’t think the above scenario has happened because people don’t care. I think you learn so much by going through the process and many of the people who have gone through this process are busy taking care of kids with medical needs and might not have time to advocate for changes that might make the process easier. That is what I hope to do in this role: be an advocate for patients and their families. That includes both while in the hospital and once they are home. I hope to create closer ties with organizations that also support our patients and families. When families leave the hospital I want them to already feel connected to these organizations – both the resources they provide and the other families they serve as connecting with families in the same boat can be hugely beneficial.
Q2. What obstacles have you overcome in your life?
Certainly having a medically fragile child and losing her at almost 17 months old has been a challenge – but one I have learned so much from. I am a better person because of Grace… but this took work. Grief takes a huge toll. Addressing the PTSD from almost losing her many times and then her actual death has been a concentrated effort. These emotions once felt like a heavy weight. Now, thanks to therapy, I concentrate on what Grace taught me and continues to teach me. It feels good to use these lessons to help others and I now wake up inspired and grateful rather than consumed by sadness.
Q3 who is the most significant person in your life and why?
My daughters and my husband.
Avery is our oldest. Grace was our middle child. Luciana is our youngest. My kids have taught me to be less selfish, to stop and enjoy the moment, to explore things I never would have explored before, to laugh because it feels good, to practice what I preach and to love without condition.
My husband Vinnie Esposito is my rock. I’ve always been pretty independent but he centers me and this has become more and more important to me as we grow and change as individuals and as a couple. I appreciate his listening ear and honest feedback. He amazes me with the details and stress he handles daily, all the while showing respect and building relationships along the way. He demonstrates how to not be petty. He encourages me be tough when I need to be also allows me to fall apart when necessary – which has happened several times since Grace entered our life. He loves me for who I am which has evolved over our 11 years of marriage.
Q4. Where can we expect to see you in five years?
Professionally I have just started this new job but I would not have left the one career (TV journalism) I have ever known if I did not believe in it. I have ideas of what I want to achieve in this job but I am also taking the time to learn what is already in motion here at the Children’s Hospital and URMC – it’s an incredible place.
Personally I have loved helping to coach my daughters’ soccer teams. I grew up playing sports and still use a lot of what I learned through them: teamwork, pushing yourself, recognizing the strengths of others as well as my own weaknesses and showing appreciation for those who support you. I love watching them enjoy these things but encourage their other interests too including theater, art and singing. My husband and I just completed the Four Season Challenge which is a half marathon in each season. That combined with 2 full marathons completed in the past, I might cool it on the distance running for a little while. I’ve really started to enjoy spin classes and other workout classes at M/Body.
Q5. What are some of your most memorable experiences?
From a professional stand point I am proud of the reporting work we did covering Hurricane Katrina along the Gulf Coast for 3 weeks. We found out what people needed there and Rochester responded to our reports by giving, including Kodak that donated disposable cameras for people to document damage from the storm for insurance purposes.
I became a journalist because I got sick as a teenager and could not pursue my passion of playing sports. At the time the illness I had, called Chronic Fatigue Syndrome (CFS), was not very understood. For years the public had little sympathy for CFS patients. A 1994 Boston Globe article about my battle helped take away some of the stigma. Seeing how information can lead to understanding and tolerance made me want to be a journalist. A story I did about a young man in the Rochester area who is struggling with CFS has been published internationally and is often used by CFS advocacy groups.
Finally, using the TV platform to raise money and awareness for Golisano Children’s Hospital has been both a personal and professional highlight. I am grateful to have lead the coverage of 13WHAM’s participation including raising money for Grace’s Garden at the hospital which is a healing garden in my daughter’s name. I hear weekly from people about how much this space has meant to them.
Q6 how have the changes in media (increased social media) affected your career?
Social media has given us each a platform to share more of our lives. Reporters and anchors are able to share more with an audience than what people see on TV. And the audience can share more with the people they invite into their homes each day. That can allow us to see more of how we are alike – and that feels good to know we are not alone in whatever we have going on. This helped me as a journalist and a mom connect with others who may have had a sick child and/or lost a child. It made me realize the need for the job I now have at the Children’s Hospital.
But while social media has allowed us to relax the walls that separated us before, it has not meant journalists can relax their standards. We must still have at least two credible sources and we must still state fact and not opinion when it comes to the news. In this day and age of social media, almost anyone can represent herself or himself as a journalist and because of this the public might take as fact something that does not meet the threshold of what a journalist would consider based in fact. I think this has led to confusion. I think it has allowed people to carve “their truth” out of the bigger picture. When everyone is eager to prove they are right and to prove that a different view point is wrong are we really listening to each other? It’s sad that some really good and important reporting is being dismissed because some people don’t believe reporting without bias is still possible.
Q7 what are your hobbies?
I do enjoy exercise but would say my favorite hobby is carving out family time. The work week is busy and we enjoy many charity fundraisers throughout the year but nothing beats a quiet night with a family movie or dinner with extended family and friends on our back porch.
Q7 what social issues are you most passionate about?
I am set up for success in life. I have a safe and warm home, a loving and supportive partner, an income and reliable transportation. Still, caring for and then losing our daughter was a challenge that tested all I had. I stay awake at night wondering how others who face more challenges in life might fare in a similar situation and it scares me. I’m not the doctor or nurse or researcher who is trying to cure or treat children but through this job I want to make a family’s journey easier by smoothing out some of the non-necessary bumps in the road. When our family was in crisis I had to not only connect the dots but find some of the dots in the first place. I want to take this stress away from an already stressed family.
We thank Jennifer for sharing her amazing story with us, and wish her the very best on her new adverture. The best is truly yet to come.