I went on a reading frenzy days after I found out that my daughter has Wolf Hirschorn Syndrome.
The syndrome does tie in altogether the multiple congenital anomalies that my daughter has. The agenesis of the corpus callosum, the cleft palate, the impaired renal function, the suspected heart murmur, and the possible hearing loss. Reading about it also gave me an idea on what the long term outlook is going to be like (but it didn't really make me feel better).
From the many websites that I visited I found out that she will always be physically smaller compared to other children her age. She can already be ten years old but be the size of a 5 year old. Speech and language delays are to be expected (which of course is made all the more challenging for my daughter who has a cleft palate and suspected hearing loss). Some children do not speak at all and communicate mainly via gestures and sounds, although there were reported cases of WHS children being able to utter one to two words. Mental retardation is also to be expected (which of course is compounded by the presence of cysts in her brain and the underdevelopment of the corpus callosum) and in most cases children with WHS fall under the moderate to severe range although there are reports that some children with WHS exhibit mild retardation. It is also to be expected that motor milestones will be delayed as motor issues are also comorbid with the syndrome. Feeding problems are common (again the issue with her cleft) and health problems can co-occur with the syndrome such as renal problems, heart problems (check on those two), immune problems (we already have an immunology doctor's consult), vision problems ( already have an opthalmologist doctor's consult), orthopedic problems. Seizures are also a possibility (we are still trying to schedule an EEG appointment).
In less words.... global developmental delays are expected.
Although I have understanding of what all the above jargon means.... the magnitude of the depth of what it means was just too overwhelming. After all, I am not taking this in from the perspective of a special educator... this time I was on the other side of the table... I am THE parent and reading about this is disheartening.
I kept on reading and reading... and I found out that the more I read, the more depressed I became. I had to stop reading.... there will be nothing new for me to read about that I have not already read. I will not happen upon a website that will have all the answers that will solve all the forthcoming issues and problems. There will be no wesbite that will link me to the miracle that I was praying for.
This is it... I was at the end of my rope.