Noonan Syndrome (NS)
Support Group Introductions

Crouse, Lacy (as at 2/99)

Hello, my name is Lacy Crouse. I joined the list in May of 1998. I enjoyed "meeting" the people on the list so much, I decided I wanted to be more involved and became a State Rep.

My interest and reason my daughter, Jenna, is 9 ½ years old and has Noonan Syndrome. She is the youngest of four children and is the only girl. She was born at approximately 37 weeks (April 23, 1989.) Pregnancy was normal.

Jenna was born quickly weighing 6.5 pounds and 20 inches long. She had a bit of fluid in her lungs and no one questioned the condition. I was released from the hospital without her. This had never happened to me before!

I was told that she was extremely jaundice from my blood crossing with hers. My type is positive and hers is negative. Her little liver just couldn’t handle all the extra red blood cells especially because they were so foreign.

She was placed in an Isolette under the "lights" to help the PKU levels to come down. Jenna was very difficult to wake to nurse. She barely took water or formula when I could not be there. She was in the hospital for a little over a week. When she did come home her PKU was still a bit high. She still wasn’t an eager eater. It was still hard to wake her and arouse her interest.

At six weeks of age, she was hospitalized again. She had a cold that went into bronchitis so quickly that I was amazed and perplexed. This was when the heart murmur could really be heard. An ultra sound was conducted and revealed an ASD, VSD, and the Pulmonary Stenosis. She was in the hospital for a few days and from then on we had weekly appointments. As time went on the appointments were then once a month, every other, every three, every six and it remained that was until she was about two years of age.

The term, Noonan Syndrome never came up. Of course as I see her baby photos I don’t know how it could have been missed unless the cardiologist had never seen or heard of the syndrome. Is this really possible? We know it is!

The threat of the balloon catheter was ever before us. This was frightening. The number of appointments never made too much sense to me. If I had known better at the time, I would have taken her elsewhere for another opinion. I was under the impression that we were receiving the best care possible and I liked the doctor.

I don’t recall the exact point when it was finally ok to be seen once a year rather than every several months. I believe she was about three. The next appointment placed her at the age of four and heard the same thing, "We’ll see you next year." Suddenly, our insurance was cancelled because we had moved out of our coverage area. I found doctors for the family as quickly as possible. Jenna and the boys went into the new Pediatric Dr. as soon as we moved here. I felt it important that we be established before any illness should occur.

The new Dr. said he didn’t believe what he was hearing compared to the last Dr. report. How could they be so far off so quickly? Could it? Jenna hadn’t had any great physical growth that would have stressed her heart out. She was "normal" to me. She was always a little blue around the mouth and would tire after rough play. (She’s all girl to view but you should see her in action with three big brothers.)

We had seen two different cardiologists within the same HMO. One was in the Bay Area, CA and the other in Sacramento, CA. Were these basic HMO guidelines they were following? The only device for investigation used was the Doppler. They had never performed an angiogram.

A new Doppler was ordered, done and compared by our new Cardiologist. The opinions of the old HMO and the new were conflicting widely. We saw another doctor and a surgeon. An angio was done. Opinions all confirmed, without a surgical intervention within a six-month period of time, Jenna could suffer ir-repairable heart damage. By this time, thankfully, the VSD had closed on it’s own.

Now we were looking at the open-heart surgery, which took place in April of 1994. The surgery itself was a huge success. We had a great support team consisting of family, friends, our Pastor and his wife.

I mention this because I asked Jenna who she wanted to see when she was out of surgery. Of course she couldn’t comprehend what she was going to feel like or even begin to imagine what all of this meant. Neither could we honestly! I felt as though there had to be a positive expectancy. The type of person that I am, I had to plan and control the things that were within my reach to do so.

Currently our issues are asthma, difficulties academically, and the emotional battles when Jenna is being teased.

Jenna is petite and very pretty! I must brag. But she is also in Special Ed. until the lunch hour. We all know some children can be mean.

Jenna has a processing problem where reading and math are concerned. Her writing skills are behind due to low muscle tone and the general fact is that she is about a year behind in all-educational skills. That was the indication of the last test scores shared with us.

As a mother and a member of this list, I can honestly tell you we really are a family at TNSSG. If you need support, direction, information, or a listening ear you have come to the right place! And if you have any of these things you can return we need you! Join in with us there’s plenty of room!


Lacy Crouse from Grass Valley CA
lacy333@jps.net


P.S. It is very likely that Jenna’s big brother Joe (soon to be 19) has NS as well. He was born with a VSD and is about 5’ 8" and weighs only 150 pounds. He was never in Special Ed. He has some other questionable traits as well so I didn’t elaborate with him.

James (soon to be 14) has no traits at all.

Jeremiah (10) is questionable. He looks as though he has some webbing. He has a slightly large head and is in an IEP program for help with reading and math. It is time for a new review with the geneticist.


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