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.
The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.