Our story begins in June 1996. I had a wonderful pregnancy without any problems except that Tracie was breech at 37 weeks. I went in for a version ( an external maneuver over the abdomen done to attempt to reposition a baby in the head-down position). This put me into labor that night. We had chosen not to do any testing; we were 26 and healthy. Tracie was born 6-28-96 at 12:15am by C-section. She had a large protruding forehead and "mitten hands", fingers and toes were tightly fused. The operating room went from happy sounds, "we have a baby butt, a girl butt" and laughter to total silence. Within hours the Panda team from Doernbecher Children's Hospital had transported Tracie to Portland. Her Dad Travis and Great-Aunt Mary followed soon after. The old medical textbook from the 1960's the Salem hospital staff found that night said Apert syndrome was a random genetic syndrome with a very dour, gloomy prognosis. Thanks to God and wonderful doctors, nurses, respiratory, therapy of all kinds our Tracie is 17 years old; just recovering from hopefully the last major surgery of her life. She has had 20 operations; some major, some minor-many here in Portland. When she was in the NICU in 1996 we watched the huge cranes as they built the "new" Doernbecher. While in the NICU there was no room for parents to stay over, we sat upright in chairs for days. The staff was amazing but how we loved it in 1998 when we could room in with the beautiful new building. It felt like a well designed, kid-friendly hotel with some medical equipment here and there. We can never thank all of the staff personally but are thankful for your great care, and kindness to our daughter who has been through more in 17 years than many people go through in 80 years. We have made wonderful friends with other families; some we still keep in touch with now and then after 17 years. Child life specialist Cindy Barshay has impacted Tracie's hospital stays and outlook o
n life more than she knows. She met her again today and didn't recognize her as 2004 was her last big craniofacial surgery.
My family is extensive, most from Silverton, Oregon. My baby sister Rachel was born in 1983 with Down Syndrome. In 1994 she had open heart surgery at Doernbecher. She has done very well since. Today, 7-17-2013, she came to visit Tracie along with other family. We took a walk to the playroom on 10 North. We talked about how she had surgery at Doernbecher. "This is my favorite hospital!" The Nielsen family from Whitehall, Montana echoes this sentiment. Thank you to all who make this hospital possible.
Karen Nielsen, Tracie's Mom