Western Australia, November 1983
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 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 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 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.
* 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.
Update October 2007
It’s been some years since I last updated Suey’s info on the site. She is going to be 24 on the 18th November this year. Suey’s life has flowed into a great routine of wonderful carers and a lot of interesting days spent with them. All four of my children still live at home. They seem to enjoy the company of each other nd the farm on which we live I’m sure plays a great part. Suey’s eldest sister Jen works as a project officer for an arts group that is specific to disability, DADDA. She finds the work extremely rewarding and is very good at motivating those she spends time with. I have enclosed some photos of Suey out and about in the community. She is a delightful personality and is very well known to all those around her.