Today we’d like to introduce you to Elizabeth Simonton.
Elizabeth, we appreciate you taking the time to share your story with us today. Where does your story begin?
I moved to Miami when I was 25 to finish the 3rd semester of law school at the University of Miami. I did not know one person in Miami and it was exhilarating for me to be in this energized city with so many opportunities. My goal was to pass the Florida bar exam and move to Ponte Vedra Beach in North Florida, but I never got there. I was pulled into the culture, lifestyle, and beauty of Miami… and here I remain!
I had a 5-year career as an attorney and during that time married, Louis Freeman, a radiologist for Baptist Health System. We welcomed a baby girl in 2010 and another, shortly after, in 2011. The genesis of ICU baby began in the second trimester of my third pregnancy when I was diagnosed with polyhydramnios, a medical condition diagnosed when a pregnant mother has an excess of amniotic fluid.
Fifty percent of the time the causes of polyhydramnios are known: gestational diabetes, fetal abnormalities, Down Syndrome, etc. The other fifty percent of the time, the causes of polyhydramnios are unknown and the baby has no long-term complications. This diagnosis changed the tone of my pregnancy. What should have been an exciting time, was filled with stress and uncertainty. While doctors were able to rule out some of the causes of the condition, they could not rule out others until the baby’s delivery.
Fast forward to delivery day… Benedict was born at 9.2 lbs. – chubby and perfect. We thought we were in the clear until the second day of Benedict’s life when he became sick and was taken quickly from me. The next time I saw him, he was in the NICU with IVs and chords all over him. Benedict’s time in the NICU was the longest seconds of our lives but in hindsight a very short time. We were in the “best-case scenario.”
My passion to start an ICU baby came from witnessing other families’ and babies’ struggles in the NICU while I sat at Benedict’s bedside. For months I feared for my son, yet I left the hospital with a healthy baby. Many other families have much more challenging NICU stays and long-term outcomes. We got lucky. There is a sense of responsibility that comes with receiving the blessing of a healthy child.
I now appreciate that not every child’s entry into this world is an easy one. It is for these reasons that I advocate for and support families whose stay in the NICU is a week or many months and families whose babies do not leave the hospital. They are not alone because they have a community like ours to uplift them through ICU babies.
I’m sure you wouldn’t say it’s been obstacle free, but so far would you say the journey have been a fairly smooth road?
Starting a non-profit organization is incredibly exhilarating and rooted in passion and compassion for a cause. Running a successful non-profit organization is challenging, at best! It requires hours – a labor of love – devoted to figuring out impactful ways how to help, collaborating with key stakeholders to advance the mission, and then fundraising to support it all.
ICU baby’s successes (and there are many!) are because of the incredibly talented and intelligent people that have felt drawn to the mission and volunteer or work to support all of our initiatives. Every single NICU parent we positively impact is a success for us. It’s a privilege to be invited into their life at such a challenging time and we take our responsibility to them very seriously. We want to make every family’s NICU journey easier to endure.
ICU baby’s primary challenge came with the pandemic. Navigating how to maintain and also grow a hospital-based organization during COVID-19 required innovation, creativity, and even a little luck. NICUs were closed to outside people for the safety of the babies and their families. This meant that ICU baby had to change its programmatic structures almost overnight!
Trying new approaches required taking a bit of a risk in some areas and transforming even the internal way in which we were conducting programs. At the time it was daunting but now, on the other side, ICU baby is so much better situated and organized after weathering those challenging times. We learned a lot, very fast, and are now able to fulfill our mission with newer approaches that are more effective.
The organization is currently being asked to grow and move into more South Florida hospitals. Our challenge for 2023 is finding new funding sources so we can have a broader reach and fan out to support more NICU families in South Florida.
Thanks for sharing that. So, maybe next you can tell us a bit more about your business?
ICU babies is a non-profit organization founded in Miami out of personal experiences. Its mission is to unite NICU families and provide them with emotional, financial, and informational support so that families and babies can thrive together in the NICU. Since being founded in 2014, ICU baby has become the largest organization in Florida that supports families with a baby in the NICU and the only organization in South Florida to provide support programs.
ICU baby currently serves the NICUs of UM/Jackson Memorial’s Holtz Children’s Hospital (127 beds) and Baptist Health System’s South Miami Hospital (62 beds). Plans for expansion to additional hospitals in 2023 are underway. ICU baby has three pillars of support programming designed to meet the differing emotional, financial, and informational needs of Miami’s diverse population of NICU families.
The emotional support pillar includes programs that promote mental health and well-being, parents’ direct care of their baby, and community connection. The NICU Pack Project provides parents with a tote bag filled with NICU supplies so that they can participate in caring for their baby. Parent-to-Parent Support is the ICU baby’s mentor program whereby support is offered by veteran NICU parents to current NICU parents.
The Meaningful Meals program offers a warm meal in a conference room near the NICU so that families can connect with other current NICU families and take a break from the stressors inside the unit. The ICU Read program brings in volunteers to read to unvisited babies, providing babies with auditory stimulation needed for healthy development. The Foster Care Kit program supplies necessary items for babies who are being discharged into foster care.
Bereavement Support provides parents suffering a loss with emotional support and when there is financial insecurity, a stipend to cover the costs of burial. The financial support pillar of ICU babies programs is the Transportation Assistance Program which eliminates one of the most prevalent barriers to parents being at their NICU baby’s bedside – expensive home-to-hospital travel costs. Financial stipends are provided to families of low-income levels to provide for gas, parking, bus passes, and private rides.
The pillar of ICU baby’s programming that offers informational support is the NICU Empowerment Support Tools – the NEST Program. ICU baby’s NEST gives parents a linguistically, culturally, and digitally accessible opportunity to be informed and involved in their baby’s hospital care. Information about the NICU and community resources are available through curated materials, created by NICU parents for NICU parents.
ICU baby serves the families of over 600 NICU babies a year and offers all programming in English, Spanish, and Haitian Creole. The organization employs 3 full-time and 3 part-time professionals. ICU baby is a volunteer-driven organization with over 20 consistent mentors and over 300 volunteers annually who help with additional projects. ICU baby is recently most proud of having won Florida Blue Foundation’s 2022 Sapphire Award for Innovative Programming.
We’d love to hear about any fond memories you have from when you were growing up.
Playing sports with my Dad and my brother in our yard is one of my favorite childhood memories. I grew up in the Northeast so, being outside playing, especially in the Fall, is a time I look back on and cherish. The Fall evenings were chilly and we would run football plays through the leaves falling off of the trees.
My Dad would even create yard lines with lime and invite the neighborhood children over to create teams. To this day, I am a huge football fan and my 3 children have each won the PE award in their respective schools. I love to play!
Contact Info:
- Website: icubaby.org
- Instagram: @icubaby_org
- Facebook: @icubaby.org
- Linkedin: @icubaby
- Twitter: @icubaby_org
- Youtube: @icubaby
Image Credits
Roger Arguello Photography
