The Newman Family Support Center

Newman Family Support Team 

The Newman family Support Team includes a Social Worker, Clinical Psychologist, Speech/Language Pathologist, Geneticist and Pediatric Nurse Practitioner, all dedicated to the welfare of the Institute patients and families and who together have logged over 80 years of experience working with this patient population. In 2008, this team created NFFR’s CDC-funded parent booklets on Self-esteem; Parenting; Genetics; and Resources that are now used in 250 craniofacial centers nationwide. The team’s clinical care includes:

• Pre- and post-natal counseling, feeding and home care instruction
• Resource counseling for entitlements, vocational training, employment, housing, visas, legal help, transportation, recreational and ancillary services at school and at home
• Emotional, behavioral, developmental, family and genetic counseling
• Speech evaluation, medical assistance, referrals to local professionals
• Networking of families and patients
• Hospital admittance, bedside, waiting room and discharge support.

The Family Portrait Project

The Family Portrait Project is a collection of photographs taken of families who are going  through treatment at the IRPS.  The project was created by Mary Spano, the Medical Photographer at the IRPS.  Her job is to photograph patients treated at the IRPS.  The medical team uses these photos to track the progress through the patient’s medical and surgical journey. These photos are important and necessary tools, but not every patient is willing to get their picture taken, even for their doctor.

The project began with a single child who was too afraid to take a photo by himself. Asking any child to sit still for a photo is difficult, but when the child has a facial difference, it can be near impossible.  Despite great effort, Mary couldn’t get the little guy to sit still for her photo, so she asked him if he would feel better taking the picture with his family by his side. When he finally agreed, The Family Portrait Project was born.

Since January of 2008, Mary has taken portraits of over 150 families.  Check out the Blog for more information.

IRPS Families Connect

A parent giving birth to a child with a craniofacial difference can be devastating.  The dream of a perfect family life is immediately shattered.  The new reality now includes a lifelong emotional and medical journey with constant challenges along the way.  The IRPS families (parents, grandparents, siblings, caregivers, etc.) can now make connections with others who have been through the same experiences.  The IRPS Families Connect program gives all of our parents/patients/ families access to ongoing psychological, educational and social support services by allowing them to communicate with other families and patients with the same craniofacial condition.   To learn more or to register for the online forum click here.