Resource - Connections - Hope
Parent Resource Network is a non-profit organization that continues the promotion of family-centered care beyond the hospital setting.
With the partnership of local hospitals in Pittsburgh (Allegheny General Hospital, Children's Hospital of Pittsburgh, Magee-Womens Hospital, Mercy Hospital, The Children's Home of Pittsburgh, and West Penn Hospital) and other involved community members and parents, this organization is setting a standard for the community to do better when children are discharged from the Neonatal Units or later diagnosised with a congenital disorder, and have ongoing medical needs till the child is 21 years old.
Our programs include a Toll-Free Line available 12 hours a day/7 days a week, support groups, hospital outreach, helping hands program and parent mentoring. Parent Resource Network also works with a stellar group of medical advisors throughout the City on various projects for families.
Taylor's Story
Kelly and James Fraasch never imagined when they found out that they were expecting in November of 2000 that their child would be born just 5 months later. Their dreams of a healthy pregnancy, enjoying a baby shower, and bringing home a bundle of pink joy from the hospital were shattered in April of 2001.
Their daughter, Taylor, was born at just
1 lb 4oz (the dimensions of a beanie
baby, but the
beanie baby weighed more) with a less than 5% chance of
survival the first 72 hours. Kelly was very sick with pre-eclampsia and even though she was very ill after the delivery, Kelly got to see her daughter later that day.
"She was red like a kidney bean and pulling on her ventilator tube. The experience was very blurry since I was so medicated myself. However, I remember the incredible guilt I felt for days, if not months that sat at the pit of my stomach. My heart had never ached so much and I should have done better for her."
Taylor left the NICU just before Christmas on December 10, 2001 after numerous illnesses, surgeries and complications from her prematurity. So, the amount of time this family should have had in pregnancy they spent in the NICU-9 months of struggles. Taylor was released with numerous concerns and conditions. Taylor was legally blind, she had a trach with severe BPD (Bronchopulmonary dysplasia), she recovered from NEC (necrotizing enterocolitis) but had GERD. She had no mobility. She was 9 months and couldn't hold her head up, couldn't do all the things a 9 month old could do. Her possible outcomes were Cerebal Palsy, Mental Retardation and The Fraasch's remember one of their options before discharge was a group home rehabilitation facility full-time for Taylor.
Years of therapy, doctor's visits and millions of dollars later, "Taylor is beyond words." She reads, writes, adds and subtracts, sings, dances, plays the piano and yes she has a mild visual impairment, a hearing impairment and some cognitive delays. She gets sick more often than most kids, however, she laughs like an angel. She tells us she loves us. She is our gift. I would never want to see her or any child suffer the way Taylor did, but we couldn't imagine our lives without her." James said. "No matter the challenge, Taylor is capable of doing anything she wants and we will support her in every way to make sure that she is happy, healthy and fulfilled in her life. She fought for this life and deserves the best!"