Rising Stars: Meet Kara Boo

Today we’d like to introduce you to Kara Boo.

Hi Kara, can you start by introducing yourself? We’d love to learn more about how you got to today?
I was five months pregnant, living in Hawaii when I first learned about Taussig- Bing Anomaly, a rare and complex congenital heart defect. I went in for my 20- week regular checkup, and at that time, my then-husband and I decided we did not want to know the sex of our baby. I learned that I was having a boy, and I also learned my son would have multiple heart defects. I am not sure if I realized or understood the seriousness of what we were about to face until the cardiologist sat my son’s father and me down in his office and told us our son would not survive without having a complicated open-heart surgery right after birth. The cardiologist then said we have three options; 1) We could abort; 2) I could carry my baby to term, deliver him, and then let him pass on his own. 3) We plan for open-heart surgery right after birth. Without hesitation, we chose the life-saving surgery, but I knew my world would be changed at that exact moment. Unfortunately, the medical facility in Hawaii could not handle that type of care, so we made plans to go to San Diego. At the same time, my son’s father’s military unit received orders for Afghanistan. Knowing I would need physical and emotional support, I started researching pediatric cardiologists in Nashville since it is where my parents live. Shortly after, we soon received orders to travel to Nashville.

My labor was induced on February 17th, where I spent the next 24 hours in labor, which ultimately led to an emergency c-section. This was the first and only time I have been in labor, and it is still a somewhat terrifying story I have a hard time sharing. However, I would never change the result.

My son, Kael, was born on February 18th at 4:19 pm. He had his first open-heart surgery at eight days old. His condition would require more surgeries and ongoing medical attention. Still, with his father deployed to Afghanistan soon after the first surgery, I faced the prospect of dealing with it alone. He had second open heart surgery at five months old. Kael had undergone three angioplasties, a colonoscopy, and several other complex surgeries with complex names before he was six months old. Soon after, he was diagnosed with failure to thrive, which means he was not gaining weight, lacking growth and development, and lacking nutrition. I spent the next few months waking up every hour during the night to get an ounce of formula in him. Most of Kael’s first two years of life were spent in the hospital. Then things become touch and go. My son has endured over 20 surgeries and procedures. Right before his 10th birthday, he had a 3rd open-heart surgery.

My Kael is now 18 yrs old, and for most of this journey, I faced as a single mom. In the beginning, I was so ashamed and felt I had caused the defects in his heart. The guilt was crushing. I even had my family and close friend swear they would not tell anybody. I was suddenly in a world I didn’t even know existed. Even though I had support from my family and friends, they could not understand what it is like to have a child with complex medical needs and never really know when a day might be your child’s last. It can be a very lonely, helpless, and hopeless place. It wasn’t until Kael was a year old I decided to seek therapy and from there, my first support group for families of children with CHD. In the support groups, by connecting with other parents who were faced with similar situations, I felt I wasn’t alone. I found people who understood, who just got it. I also realized I didn’t want any other parent feeling like I felt. It started with me attending the support group in the hospital; soon after, I, along with another mom, facilitated the same support groups. We then started hosting other events for the CHD community, including the proclamation of CHD week, which is February 7th-14th. I was asked to join the hospital’s Family Advisory Council and became chair of the council. It was there, working alongside providers and family members, I became more passionate about children’s healthcare, learning more about disabilities, advocating for those who cannot advocate for themselves, Family-Centered practices, peer-to-peer support systems, and teaching other families how to gain knowledge about their child’s health care.

In 2013, I learned about Family Voices of Tennessee; they had just acquired a grant to start a parent-to-parent program for the state of Tennessee and were looking for someone to coordinate the project. I wasn’t looking for a job, but having the opportunity to be part of a family-led organization that supports families like mine was something I was interested in. I was hired as the project coordinator, and TN Parent to Parent was established in the fall of 2013. In 2014, I was one of six in the nation accepted for the Association of Maternal Child Health Program( AMCHP)’s Family Scholar program. In 2015, I was honored to receive the Tennessee Hospital Association Award of Excellence’s Meritorious Service Award for working with the Monroe Carell Jr Children’s Hospital’s Family Advisory Council.
I became the Director of Family Voices TN in 2017, and we established two more programs, including a youth program. Altogether we have five statewide programs that serve families, and all of our services are at no cost to the families. Currently, I serve as a board member for Parent to Parent USA. I have done and continue to serve on various councils and committees, including Tennessee’s Committee of Pediatric Emergency Care and Cumberland Pediatric Foundation/ Vanderbilt SOCKS Community Advisory Council as the co-chair. In addition to being Director and overseeing all of Family Voices of TN’s programs, I’m also the Family Faculty for the LEND Center (Leadership, Education in Neurodevelopment and Related Disabilities) program at the Vanderbilt Kennedy program.
My passion continues to ensure every family has a voice and no one feels they have to walk this journey alone. Most importantly, helping my son understand he is not alone. This is something he will have for the rest of his life, and he will never be done. His heart will always require maintenance. BUT my son, Kael, is so much more than his heart. He has grown up to be an extraordinary young man who has defied many odds that some may call nothing short of a miracle. His empathy and compassion towards others are something to admire. When you meet him, you are immediately drawn to his infectious smile. He has the best smile. He never meets a stranger and is always fighting for the underdog. You should see him with animals, all animals really, but especially dogs. Our family and friends call him the dog whisper. I am constantly in awe of his courage and strength. He faces battles that many of us could not imagine. Now, this is not to say he isn’t stubborn (like most teenagers) and hardheaded, but I consider this a good thing. Sometimes you need to be stubborn to face all of what life brings.
I guess what I most what to share is how proud and honored I was chosen to be his mom. That might not fit the rest of the story, but my son is why the story exists. He is the drive that keeps me going.

Would you say it’s been a smooth road, and if not, what are some of the biggest challenges you’ve faced?
Whenever someone has a child with special health care needs or illness, it comes with unique challenges. My story is no different. However, there was also the complexity of being in a military family. Kael’s father and I decided that we wanted Kael to continue to receive care in the hospital in Nashville. That meant Kael, and I would stay in Nashville, and his dad would volunteer deployments. This ultimately ended the marriage, and a messy divorce followed. Kael was 12 years old when his dad left for good. As you can imagine, this was incredibly hard on him.

Alright, so let’s switch gears a bit and talk business. What should we know about your work?
I am the Director of Family Voices of Tennessee, a statewide not-for-profit and an LLC under the Tennessee Disability Coalition. Family Voices of Tennessee (FVTN) provides emotional and educational support to the families of children with special care needs, chronic illness, and disabilities. To reach these families on what can be a lifelong, complex healthcare journey with their child, FVTN has created a unique network of experienced staff and volunteers who have personal experience navigating the healthcare journey of an individual with a special healthcare need, chronic illness or disability. FVTN serves families across the state of Tennessee and children of all ages and diagnoses at no cost.

FVTN’s network is focused on connecting, training, and leading with the families we serve. We connect these families with community resources, experienced parent mentors, tools to navigate complex systems in healthcare and insurance, and more. FVTN has hundreds of partnerships with local and national organizations, with reciprocal referral relationships and access to much-needed information on resources available to the families we serve. By training these families, we empower them to advocate for their child’s needs and lead in their local communities and beyond. As leaders alongside these families, we are educating healthcare providers, policymakers, educators, and others on the improved outcomes by including, listening to, and honoring the voices of these families.

What makes FVTN unique is that all of its staff are parents/caregivers of a child w/ special health care needs OR self-advocates with special health care needs. Because we are all parents/ caregivers or self-advocates, we understand each other uniquely. There is a natural synergy that happens when we are all together. And then that synergy is shared with each family we serve. We all share the same passion for helping families and supporting them by meeting them where they are; we work together to accomplish our goals. The culture of FVTN is a foundation of creating relationships, team building, and having each other’s backs. It is the driving force that enables us to continue to do what we do.

Through both national and local partnerships, Family Voices of Tennessee delivers a few core programs to best support the families we serve in Tennessee:
-PEARS (Parents. Empowerment. Access. Resources. Support.) Tennessee PEARS program is for families of children who are Deaf, hard of hearing or have hearing issues. This program allows these Tennessee families to connect with, talk to, or meet face to face with a trained staff person called a “Parent Guide.” Parent Guides are trained Family Voices staff who themselves have a child who is deaf, hard of hearing, or has hearing issues.
-P2P (Parent to Parent) Parents can be matched with a family with a diagnosis similar to their child’s diagnosis to talk, share information, and support one another. Through our local partnership with this national organization, FVTN has access to a nationwide network of experienced, trained support parents and can provide a one-to-one match to the families we serve.
-Parents Reaching Out is the name of Family Voices of Tennessee’s local parent support groups. Held in the Tennessee hospitals Family Voices of TN serves (heaviest concentration in Nashville, TN: Monroe Carell Jr. Children’s Hospital at Vanderbilt, Centennial Women’s and Children’s Hospital, and Saint Thomas Midtown Hospital); these support groups are led by a trained Family Voices of TN educational speaker
-Family-to-Family Health Information Centers (F2FHICs): These F2FHICs are designed to provide family-friendly resources and information to learn about health care service systems and programs for children with special needs. Their purpose is to provide training or assistance to families navigating various service systems, including Medicaid and TennCare, SSI for Children, Title V (Children’s Special Services), Early Intervention (TEIS), and other programs. Family Voices of Tennessee continues to operate an F2FHIC.
-Voices for Choices: Leadership training for families who want their voice to be heard in decisions that affect their child’s care.
-Third space: Youth building a more inclusive world through leadership training and youth to youth mentorship. In partnership with the TN Dept of Health’s Youth Advisory Council, we also facilitate.

Is there anything else you’d like to share with our readers?
I believe self-care is essential, but I still have to work at it. I practice yoga every day, and I teach several classes a week. It helps me keep things balanced.

Kael graduated high school in May. He plans to go University of Tennessee at Chattanooga and study biology, ultimately becoming a Marine biologist. I married the love of my life last year, June 2021. Steven and I met about three years ago, and I knew he would become my “forever date by the second date.” Steven and Kael have an excellent relationship. It is a pretty awesome thing to see.

Pricing:

• All of our services are at no cost to families

Contact Info:

• Email: [email protected]; [email protected]
• Website: familyvoicestn.org
• Instagram: @familyvoicestn @thiiirdspace @karajayboo
• Facebook: @familyvoicestennessee @karajboo
• Youtube: familyvoicestn
• Other: https://definingpersonalizedcare.vanderbilthealth.com/kael-adams

Image Credits
Staci Smith