Noonan Syndrome (NS)
Support Group Introductions

Brennan, Deanna (as at 10/98)

Hi! My name is Deanna Brennan. I am the mother of two beautiful children. Ashley, age 6, and Tyler, age 4 (born 6/20/97). Tyler is a special needs child. He deals with several different medical conditions. He has Noonan syndrome and a history of supravalvular pulmonary stenosis & an ASD, growth hormone deficiency, reflux, delayed gastric emptying, infantile anorexia (hypothalamus problem), asthma, multiple food allergies, a hearing impairment & platelet dysfunction (bleeding disorder). As you can see I have a lot on my hands, as do all of you. Tyler underwent open heart surgery Nov.16, 1995, after an unsuccessful cardiac catheter. During the catheterization the doctors found a large ASD that had gone unnoticed. The surgery went well and Tyler was supposed to be out in 5 days, but... he developed a lot of problems 4 days after his surgery. Pnemothorax and Chylothorax ! The doctors couldn't seem to get a handle on it all and Tyler’s left lung collapsed 4 times & he then got a real bad line infection. The doctors weren't sure whether or not he would make it , but I told everyone that Tyler was a fighter and of course...he is! We were just told in October that Tyler has some cardiac regurgitation so they are keeping an eye on it, but it is mild and he is having no problems from it, so we are just taking things one at a time. He is dealing with his asthma and allergies and has therapy for speech and hearing. I know we have a ways to go, but everyday there is something new be glad about. It is a roller coaster and we are hanging on like everyone else in hopes that some day it will just be an
easy ride. I live for the days that are just normal 4 year old antics! Right now Tyler is attending a early childhood special education class. He is doing great and having his therapies done at school. He goes full time and just loves it. We are still very careful of him and he is still on quite a few medications but he is eating on his own and has turned into such a character. We can’t imagine our life without him or without Noonan Syndrome.

If anyone would like to email me they can at desmilz@iname.com. I have a lot of experience with feeding problems and would be glad to listen or try to help. I have found a sense of family with the NS listserv and you will too.

Deanna, October 1998

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