Noonan Syndrome (NS)
Support Group Introductions

Zeh, Art and Linda (as at 1/97)

Art and I are the parents of 2 daughters- Olivia (3 yrs) and Erica (6 months). When Erica was born, we were told she had Down syndrome. 1 1/2 wks later her genetic tests came back normal and we were told that she could simply have features that are "variants of normal." We were so elated but we constantly studied her and tried to explain her look. (wide bridge, low set ears, high chest and extra skin on the back of her neck) Art was convinced she was "okay" but I just knew because there were to many things to explain.

At her 8 wk Dr. visit, they found an extremely high blood pressure and she had surgery the next morning. The cardiologist was the first to tell us about Noonan's. Despite all our worries, it was a great relief to finally "know." A coarctation of her aorta was repaired and the surgeon's repeat rate is considered low - 10%. She is also being monitored for cardiomyopathy.

It has been so helpful to talk with Wanda and some other parents. The pictures on the Gallery help us see into the future and helps us realize that Erica is not alone. Her picture will be on there soon if not already.

Like all of you, we have are good days and bad. It's been such a shock. Funny thing is that Erica doesn't seem to mind. She's busy banging her rattles and johnny-jumping. And Olivia is busy poking at her!

Talk to you again soon.

Linda Zeh Rochester, NY

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