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Hi,
I would like to tell you about our daughter Suzanne (Suey)
who has Cri Du Chat Syndrome. I have had some contact with a
few other parents, 4 of whom live in Western Australia, and 2 who are in
America. The Syndrome appears full of different degrees.
Suey was born on 18-11-83. She is totally dependent on a
full time carer. She was first diagnosed with Hirschprung's Disease*
and within 24 hours of birth had a colostomy. Suey
was a very poor feeder, actually she still has that tendency,
she was tube fed and purely by accident I discovered her
ability to drink from a cup. Her cry disappeared at 6 months
and she became a fairly content child. Suey has a very placid
nature and can amuse herself very easily. Suey is my second
child. I had two others after Suey and none of them have any
problems.
Suey at 2
years
Suey had a Patent Ductus Arteriosus ** closed when she was
4 yrs; her tonsils, adenoids and grommets operation when 6
yrs. Suey has also had surgery to translocate her saliva
ducts, a fairly new form of surgery which has achieved its
purpose and we have less saliva. Suey has very over crowded
teeth but they appear to not be causing her a problem.
Suey also has a slight curvature of the spine (Scoliosis)
so we are looking at seeing a specialist to assess her.
Suey at 6
years
Suey is about the size of regular 11 year old but very
lanky and thin. Her features are very doll like and her
personality is delightful. Suey is fairly fussy to feed as
she doesn't have good chewing skills but she will eat most
things as long as there is little effort on her part. I tend
to mash her food and in the case of meat, mince it so she
won't spit it out. Her other skills are limited. Her
toileting is more timing. Suey's main mode of locomotion is
crawling though she can push around a walking frame and she
will cruise along cupboards but the best transportation is
her wheelchair if going any distance. Suey has no speech at
all. We communicate by body language but because of her easy
going personality she is never frustrated by not speaking.
Suey at 15
years
TOP
Suey sleeps in a bed which is fairly low so she can get in
and out, she is a good sleeper and if she does wake early
will entertain herself very easily. Suey is patient and will
wait if I am too busy to feed her, she is also very tolerant
of other children although if they begin to fight and yell
she will burst into tears thus making the fighting parties
become aware of how they have upset her. The fights don't
last long when Suey cries.
 Suey doesn’t really have a favourite toy but loves
balloons, beads, string and shoe laces. She is very easily
entertained. She is rapt in shoe laces and will seek the
person who is wearing joggers. With her own joggers I tend to
tie them around the back of her ankle. Any type of string,
beads or ribbon will keep Suey totally engrossed and any
other toy that has a cause-effect element will also be chosen
by Suey.
Suey has been camping for a number of years, really enjoys
the experience, and appears to settle in well to this
situation. She is very sociable, loves water and in the
warmer weather spends a lot of time in the bath, she also
likes a shower.
She is a full time student at College Row Special School
in Bunbury and is a favourite with other students and the
teachers. Suey enjoys being around people, meeting new
people, seeing different places and is a valuable member of
our family.
Ann (Suey’s mother)
Suey (15)
showing off her beautiful long hair
* Hirschprung's Disease is a rare
congenital (present at birth) abnormality of the intestine
that results in obstruction because of poor motility in a
section of the intestine. It is caused by the lack of nerve
tissue in a section of intestine . It may be life-threatening
but can be successfully treated with surgery.
**Patent
Ductus Arteriosis is a condition in which the
pre-natal connection between the heart and lungs does not
close at birth as it should. Surgery may be required but not
in all cases. It does occur sometimes in
babies born with cri du chat syndrome.
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