Noonan Syndrome (NS)
Support Group Introductions
Murphy, Barbara (as at 5/97)
My name is Barbara Murphy. My daughter, Caitlin, was born 11/21/88 in New Jersey. She was around 28 weeks gestation when she was delivered by C-section because of fetal distress. She was also small for gestational age, weighing one pound and 15 ounces. She wound up spending around 3 months in the neonatal unit because of her failure to grow, and even with that she came home at only 4 pounds and 4 ounces, and did wind up losing several ounces immediately due to her poor feeding.(She had been on tube feedings up until around one week or so before being discharged home)She continued to be a poor eater, with her first year of life consisting of crying for prolonged periods of time due to this. I remember her crying one day for eight hours nonstop, and praying that my husband would get home from work before I lost it. But we blamed all of this on her prematurity and colic! I learned all sorts of techniques for getting rid of gas, but none to help her eat! I wish I had known then what I now know!
On top of the feeding problems, Caitlin also had many developmental delays. She needed PT to help her hold her head up, to learn to walk, and to learn to go up stairs. Again, all of this was blamed on the prematurity. Then she developed multiple ear infections, requiring tympanoplasty, which further delayed her speech and she received speech therapy for this. Finally, at around 3 years of age, she stopped growing. I had her see an adult endocrinologist who told me that it was because both my husband and I were short, and because she had been premature. However, my husband felt that it was because I didn't make Caitlin eat, so we went to see another endocrinologist, a pediatric one this time, because I was tired of the arguments. He stated almost immediately upon seeing Caitlin that she had Noonan Syndrome. She was now five years old and finally I learned what was wrong. Of course, all I knew then was that it resulted in short stature, and she started on Growth Hormone injections which have really helped her growth. Our physician did discuss other issues, but I think not too much of it sank in. I know he mentioned the cardiac problems, because she had to see a cardiologist, but her heart was OK. And I remember mention of the possible intellectual problems, and I definitely remember his discussion of the genetics, autosomal dominant, because he stared at me. I am not sure if I have it or not, because I frankly have a hard time being objective looking at myself in a mirror. Anyway, this group has been a Godsend! I have learned more here in the last six months than I could imagine. I realize now that a lot of what we went through with Caitlin, including her learning disabilities, and her visual problems(I forgot to mention that she has an outgoing eye when she is tired, and also that she has been tested and has definite learning disabilities), are probably all part of Noonan Syndrome.
Right now, Caitlin is doing well. She is in 2nd grade and enjoys school. Her favorite thing is learning to ride a horse in a program for disabled children.
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