Our Inspiration and Formation
The inspiration for The Tiny Star Foundation is due, in no small part, to one very special micro-preemie, my grandson, Dexter Matthew. He was born on December 5, 2018 just days after hospital bedrest was ordered as a precaution. He resided in the NICU of a New Jersey children’s hospital for 100 days before being discharged.
His challenges were many and some still remain but he is a happy, healthy little boy who loves trucks, toast and books.
The charity was officially formed on Valentine’s Day 2020. It was born out of love and a compelling desire to help others since I was so ill equipped to be of real help to my own son and his wife. I was not prepared, and from what I observed, neither were the other parents and grandparents. However, they are both physicians so they knew all too well each and every risk, what the outputs measured, the reason for every procedure, and all of the devastating possibilities that were out there. My grandson had sepsis twice, had difficulty coming off the c-pap machine and faced the outbreak of infections and viruses in his NICU room that ultimately resulted in the loss of two of Dexter’s “roommates”. They fixated on the potential that things could turn bad at any moment, were hypervigilant at all times, and I saw firsthand how too much knowledge can be very painful. This time they couldn’t help save the patient, they weren’t trained for this so they knew they had to trust the expertise and care of the staff.
I had no tools to comfort either one of them so all I could do was be the social scientist I was trained to be. I observed behaviors intently, watched the nurse-patient and nurse-parent interactions and chatted with other grandparents and parents in the waiting room on occasion. I fell asleep each night to chapters of the Preemie Handbook1 searching for answers to my many questions, but most were not there. I kept ordering other books but I never found the right fit. Oddly, there was no warm line to call for emotional support, no known NICU app for the phone or any mental health brochures available for this type of trauma or emotional distress. It made me wonder how everyone was coping with the depression, anxiety, guilt, loneliness and PTSD symptoms that are a common reaction and could be long lasting. The combination of sleep deprivation, parent shift work schedules and pre-existing histories of mental health issues are likely to make matters worse for those family members affected. So I vowed when this was over to try to change all this by educating the public and facilitating training for mental health clinicians about the impact of and normative post-partum disorders that are frequently the result of these experiences.
I know I wanted tools, tips and resources available for grandparents, other family members and caring friends, not just parents. Collectively, we wanted to be more informed and supportive. My heart ached for the siblings in the waiting room for surely they sensed the disruption in their usual routine, absence of parents, tensions and worry. Age-appropriate support during NICU stay and beyond should be available to all.
The Tiny Star Foundation was formed with you in mind as a reader or visitor to this site. We hope you feel embraced, supported, more informed and hopefully, no longer alone.
We believe “The two most important days in your life are the day you are born and the day you find out why.” - Mark Twain
We believe in the triumph of the human spirit and its capacity for resilience and our purpose is to help buffer the effects and challenges faced by families before, during and after a preterm birth, prenatal or perinatal loss. Toward this end, The Tiny Star Foundation seeks to bring a glimmer of light to all those affected by providing social, emotional and instrumental support when requested by the family.
We exist because we have identified three needs:
- Access to pertinent information and related resources streamlined and readily available 24/7 in a user-friendly format
- Public education and professional education about adverse pregnancy outcomes (including prevention, incidence and prevalence, risk factors, disparities and interventions), advocacy for systemic change and efforts that address the physical, psychosocial, and financial needs of families affected before and during hospital stay and after discharge
The mission of The Tiny Star Foundation is to facilitate the availability of financial, material, and emotional support for families of preterm babies before, during, and after a neonatal intensive care unit (NICU) stay, prenatal, or prenatal loss; provide medical and child-related clothing, supplies, and equipment and create and support homelike environments and high-quality hospital NICUs.
The vision of The Tiny Star Foundation is to promote the health, wellness, and development of preterm babies, ensure the availability of high-quality, comprehensive, family-focused neonatal intensive care services, resources, and facilities, and support tertiary chronic care management for preterm infants and their families.
Our Core Values
The values of The Tiny Star Foundation are:
- Integrity - we strive to do what is right for the good of the organization, those we serve, each other, and our environment.
- Authenticity - we believe in the benefits of authenticity and recognize we are works in progress and endeavor to be better each day.
- Diligence - we perform our services with thoughtfulness, great care, and reflection.
- Compassion - we lead with compassion, not judgment, and first seek to understand with kindness and good intentions.
- Perseverance - we will persevere because we are dedicated to making a difference and are passionate about positively impacting the lives of others.
Board of Trustees
Our founding board of trustees consists of three members impacted by the birth of a preterm baby or pregnancy loss. Our 2021-2022 plan is to increase the number and diversity of board members representing any of the following areas: marketing, law, healthcare, retail, mental health, small business, corporate, clergy and two parents who experienced a pregnancy loss, stillbirth, or preterm birth. Interviews are conducted remotely with an in-person interview required just prior to appointment (subject to COVID-19 restrictions). Board member nominees are subject to a background check.
If you are interested, please contact Karen at (908) 800-3308. An application will be completed and a resume submitted as next steps in the process. All appointments are for one to three years with a staggered renewal. Meetings are held five times per year in the evening EST (currently by Zoom).
Karen D. Carbonello, Chairperson and Trustee
Donna Orr, Secretary and Trustee
Gayle Carlson, Treasurer and Trustee
Our Statement on Racial Equity
Past and present racism, segregation, and inequity directly impact the level of risk, health outcomes and quality of care received by mothers and babies of color. The long-standing disparities in the preterm birth and loss rates, and evidence of disparate maternal and infant care, point to a critical need for changes in prevention, and intervention and perinatal care. The existence of racial trauma and race-related stress caused by the current and historical example of white supremacy, acts of hatred, and the blatant disregard for the lives of black and brown adults and children compels us to join as allies in the social justice and racial justice movements. We are committed to participating in efforts to establish racial equity in preterm birth prevention and neonatal and perinatal care as a part of our mission.
Our purpose is to provide increased access to information, education and resources as a way to provide families, helping professionals, peer-to-peer supporters and the general public with the tools needed to promote wellness and healing. Concretely, it is our intent to grow our online information portal to include specific sections for diverse populations and to translate our website into other languages to reduce barriers to access, and be more welcoming and inclusive.
We do this because we envision a world where the knowledge and awareness raises the voices of all who experience a preterm birth, miscarriage, stillbirth, or perinatal loss and empowers them to advocate for themselves and their families and their right to self-determination. We believe we can shift today’s reality if we work together for more culturally-relevant and culturally-sensitive programs that are rooted in evidence-based trauma-informed policies and practices.
We stand in support of more ongoing related training for mental health providers since the effects of these births and losses may be long lasting and more complex due to dual diagnoses, preexisting health conditions and genetic factors in addition to all the environmental and socioeconomic factors of exposure to violence, food insecurity, inadequate or unsafe housing, and preexisting adverse childhood experiences. Toward this end, we will work to become a hub of information that also collects and posts related information specifically for clinicians to promote the establishment of best practices, improved assessments, mental measures and treatment. We will strive to stay abreast of related research, online and in-person training, conferences, academic coursework and certification programs to be a small part of helping to increase the number of and diversity of trained professionals available to families.
The Tiny Star Foundation Board of Trustees
Are you a grandparent, a family member, or a caring friend? Are you looking to be more informed and supportive for a loved one? Let us send you updates on new resources, our quarterly newsletter and information about upcoming events.