We exist to support Families.The Tiny Sparks Foundation, a charitable, tax-exempt organization, is dedicated to providing assistance to families who have an infant in the Newborn Intensive Care Unit. The foundation focuses its efforts to promote positive psychosocial outcomes for families who are suddenly faced with the high stress environment of a critical care unit. The majority of the funds raised by Tiny Sparks are used to help area NICUs develop interventions to promote family-centered care. Through our efforts, not only have we provided comfort and support to dozens of NICU families each year, but we have also helped to establish the Two Hearts Mental Health and Wellness Program in the NICU at MedStar Georgetown University Hospital. This program provides mental health and wellness support to NICU families and NICU staff by providing onsite consultations to treatment providers and brief interventions, assessments and referrals for individuals and families who have a child receiving care in the NICU.
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Preterm births affect nearly 500,000 babies born in the U.S. each year, the equivalent of 1 in every 8 infants. These children often require stays in a NICU, sometimes for just a few days, sometimes for as long as several months. During this time, the parents of these infants can experience stress symptoms that can last long past their child’s time in the NICU. The emotional trauma of this experience can not only have long-term implications on the health of parents, but also affect their ability to bond with and care for their newborn. Family centered care and psychosocial support programs, like the ones promoted by the Tiny Sparks Foundation, can improve these situations and help parents develop the resources they need to navigate the NICU and be ready to take their often medically fragile newborns home.
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On November 5th, 2009, our daughter Ava arrived 11 weeks early weighing 2 pounds 11 ounces. A fighter from the get-go, she quickly let everyone around her know that she was no wall flower. As days turned into weeks turned into months in the NICU, Ava faced many challenges, including jaundice, multiple infections, surgery to eliminate her severe reflux, and most significantly, difficulty breathing on her own due to the prematurity of her lungs. Starting on a breathing machine called a C-PAP, Ava “graduated” to a nasal cannula just after the new year. Although progress was slow, eventually there was talk of her coming home, albeit on oxygen, a feeding tube, and multiple monitors. Regardless we were thrilled. And then, one week before she was due to come home, Ava’s health took a severe turn. Her heart rate increased dangerously, and her blood oxygen levels dropped severely. Within hours she was on a ventilator. One week later, on May 24th, the day that she had been scheduled to come home, we said goodbye to our brave and beautiful daughter. Although her time with us was far too short, the impact she made on all those who met her was significant. Her spirit, her courage and her smile are still with us every day.
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