I am Heather White, and my husband, Matt, and I are the new Region 3 directors for the 4p- support group. We live in Troy, Ohio with our four kids, Jack (12), Thomas (9), Mary (6), and Frank (4). Frank was diagnosed with 4p-/WHS at three weeks of age.
He was quite large as far as 4p- babies go, born at 7 pounds, 3ounces, so there had been no indicators for concern during the pregnancy. However, several features present at birth led the hospital staff to recommend genetic testing. He was healthy and we were discharged from the hospital without delay, only to receive the phone call from his geneticist a few weeks later. I was in such a state of shock, the only question I asked was how to spell Wolf-Hirschhorn, and so all of our initial information came from Wikipedia and online medical journals. It was a dismal introduction.
After a few months we finally made contact with a few other 4p- families, and met one family in person, before attending our first national conference in Salt Lake City. It was an overwhelming but positive experience! Since then we have attended numerous other conferences, gatherings, and informal get-togethers with families who have become not just “contacts” but true friends.
Frank is fortunately still in excellent health, but he is definitely small, despite his larger-than-normal start. Currently just over 20 pounds, he sits and scoots well, and we are hoping to see him walk independently within the year. He attends preschool four afternoons a week and enjoys music, horseback riding therapy, baths, and wrestling with his siblings.