Pfeiffer Syndrome Article

[craniomommynbaby]

This is an article from the Tampa Tribune about a mother's fight to receive care for her son born with Pfeiffer Syndrome.

http://www.tbo.com/news/metro/MGB76HUTUTE.html

[Katie]

Wow, I think I felt a million different emotions reading that article! Thank you for posting it Cindy.

On a side note, I had no idea that Prince had a child who had Type 2 Pfeiffer!

[Matthews Mommy]

Wow, that was very inspiring that woman has a lot of courage and strength.
I too had no idea about Prince.

[craniomommynbaby]

With Prince, I read somewhere that his baby was probably born with Pfeiffer and had the cloverleaf shape to its head. They kept it very hushed and did not talk about it, even when the baby died a few days after birth. The author of the article where I read this information also noticed that Prince is unusually short in stature and could very well have a mild case of Pfeiffer syndrome.

[Matthews Mommy]

Wow he has done a great job keeping things quiet, because I don't think there is a lot of people that know this.

[craniomommynbaby]

I was trying to remember where I had found the article. When I did a search, I found this confirmation on IMDB.
http://www.imdb.com/name/nm0002239/bio

[eden'smom]

I, too, had no idea about Prince's son, though I can hardly call myself a Prince devotee... That article was so depressing. Makes me realize again just how fortunate I am.

[Melissa]

I thought I had replied to this post....hmmm...weird. Okay, anyway, I've talked to William's mom, Lisa, on the phone a few times - she's a really nice lady, and is already a huge advocate for her son, as you can tell. They are always on the go, too - doctors, therapists, etc.

As for Prince's son - that is the same syndrome and same type of skull that Bryson was born with, the cloverleaf. We were lucky that Bryson was able to breathe enough to stay off the vent, though he did stop breathing during the night and had to have a monitor that would startle him into breathing again. (I honestly think that if he were born today with the breathing problems he had back then, they might would have gone ahead and trached him.) Anyway, Bryson had a pretty bad case, but Prince's son had a very severe case, and it is sad that they lost their son...

BTW, I've never heard of a shorter stature being part of Pfeiffer...Bryson is sort of in the middle of his classmates if you look at height, and he's hitting another growth spurt now. The docs estimated that he should be around 6 foot or so when he's finished growing.

[craniomommynbaby]

Melissa,

You did reply. I wonder what happened? :wtf As the moderator, I guess I should find out.

I wonder why the author had brought up short stature? I wish I could find that page, but maybe it does not exist anymore. I will continue to do some digging and see what else I find.

[Melissa]

LOL, Cindy - at least now I know I'm not losing my mind - I really did reply before! I don't know why he brought up short stature, unless maybe he was getting some syndromes confused. Or he misunderstood something - like how our guys tend to have thumbs & big toes that are a little shorter and a lot wider...maybe he missed the "thumbs" and "toes" part and just thought our kids are supposed to be shorter and wider, LOL...

[cheryl2]

Lol, you did reply, but on the Capps board :-) http://www.cappskids.org/board/showthread.php?s=&threadid=5251

I had no idea about Prince's son either.

[Melissa]

LOL - it figures! I get lost driving, and now I get lost as to which board I'm on!

I talked to William's mom again the other day, and we talked a little more in detail this time. She said that he has a lot of breathing issues - he has a trache, but apparently has enough other issues that she says that she's scared to walk into his room every morning for fear that he might not be alive. We dealt with that a lot when Bryson was little, too, though he didn't have a trache, so I know what she means. Unfortunately, William can't have a lot of the operations he needs because she said that he has this unusual pattern of veins across the back of his skull, and they are about the size of an adult's pinky finger - they can't/won't operate for fear of killing him. (Her docs said they only knew of one other child, I think maybe from Australia, who had that vein issue.) They also told her that if he falls and hits the back of his head hard enough (or on something like a rock), he could bleed out in just seconds and there wouldn't be much anyone could do to stop the flow of blood. SCARY!!