“My life was forever changed when my first child was born with a craniofacial difference.
When Dan was born, it wasn’t evident to us that he had a facial difference, at about 4 weeks, we could see that one side of his head was not developing fully. His eye was smaller, and his head looked as if it had a “dent in it”. Our pediatrician at a major local hospital, told me I was a “neurotic Mother”…imagine being so worried about your child and the head of Pediatrics telling you that? Fortunately, I did pursued other options and came to Children’s Hospital of Philadelphia, where I met a Pediatrician that actually recognized what anomaly was present and set up appointments with the Plastic Surgeon and Neurosurgeon. After these meetings, we were facing a craniofacial surgery on our 4 month old, which would mean opening his skull from ear to ear, correcting the misshapen bones, and making his face more symmetrical. I asked if they had performed this procedure prior to this time, and the answer was “a few”. This was 1975, and craniofacial surgery was still in its infancy. The anxiety and fear was overwhelming. I had to change my thinking to keep my husband from collapsing and myself, as well. This was not about us, but about making a better life for our child. We needed to do all that we could to give this child and his future a chance. We went ahead with surgery and gratefully have a handsome, 43 year old man, a kind and gentle human being, a Dad, an accomplished businessman.
Our Plastic Surgeon, Dr. Linton Whitaker, asked me to speak with parents about our experience and support them through the process of diagnosis and surgery, with non-medical information. I think if he had asked me to jump off the roof, I would have…this is the man that changed the future of my child in a positive way. I volunteered at CHOP for 6 years, 2-3 days a week. Dr. Whitaker hired me, paying me through a grant. 23 years later, I am still here, and have been given great liberties and financial assistance from Dr. Whitaker to develop activities outside of the hospital for our patients; activities that build self-esteem and erase some of the feelings of isolation that our patients experience.
These past experiences have shaped who I am today. Out of something so negative and devastating, I have been able to build a life of giving back to others that are in the same situation where I once found myself. It doesn’t matter that Dan’s surgery was 43 years ago, the feelings of handing over your baby to strangers for major surgery happens here daily. I support our families at the appointment, at home, at surgery time, post-op, and 24/7 by cell phone. It is my hope that my strength supports our parents, may of whom are facing multiple surgeries for many years, as their children have serious syndromes associated with facial difference. They make me strong by the support I give them everyday.”