Posted by Karin on 1/14/2008, 2:13 pm, in reply to "Re: PRS in more than one child?"
204.227.241.18
We've been told that even if we don't have Sticklers (which is unknown) that the chances of PRS are better than average (between 3 and 50% depending on who you ask) because the micrognathia is genetic in my family. The small chin, no matter how they have it, can trigger the series if it is small enough to crowd the tongue into the palate during formation. In our family, the micrognathia seems to be bad or not-so-bad in any given generation, but it also seems to be progressively worse in later generations.
When my son's cleft was repaired, the surgeon said that while the hole was very large, there was plenty of tissue to close it. Basically, he thought that my son's case followed the pattern of the "sequence theory" in that if his chin had not been so small, the palate would have closed just fine. This would also explain why I, who have no cleft palate, can have a child who has one, when a cleft palate is a dominant genetic trait. (Meaning that you have to have it to pass it on.) I have the small chin, and I passed that along, and he took it to extremes! Another way that I could have a child with a cleft is Sticklers, because Sticklers does not manifest itself the same in every affected person.
Basically, we don't know, but we face the very real possiblity that this will happen again in our future children, if the micrognathia is severe enough. I'm with you ... it is a fearful thing. But as we are approaching a time where we can see the light at the end of the tunnel, I think I will roll the dice again -- and just hope for no trach tube this time.
--Previous Message--
: We have 3 children with isolated PRS. I
: almost don't buy the whole "sequence of
: events" thing anymore considering my
: last two were twins. If positioning started
: the 'sequence of events'-- what are the
: chances that an egg would split and both
: embryos have their chins tucked EXACTLY the
: same as they developed? I asked my plastic
: surgeon this and she has no answers. I've
: also posed this question to several PRS
: specialists in Australia. All shrugged
: their shoulders.
:
: After my first daughter with PRS was born, I
: felt the same way. I didn't think I ever
: wanted kids again. I got pregnant when my
: first was 5 months old-- divine
: intervention, I'm sure. Some day though...
: you'll look back and say "that wasn't
: so bad." And someday... when you are
: watching your child playing soccer or
: football, or playing outside you will
: realize it was all totally worth it.. and it
: really wasn't so bad.
:
: Don't let the fear of Pierre Robin Sequence
: keep you from having more.
:
:
: --Previous Message--
: My daughter who is now almost 11 months old
: was born with PRS and they are considering
: it isolated so far. We've got her eyes
: checked at 5 months and everything appears
: normal so far. The geneticist told me that
: it may be caused by her position in my womb.
: I am soo scared to have another baby. The
: emotional and physical stress makes me just
: want to call it quits. I love her soo much
: and seeing her grow and develop makes me
: want another so bad, but I don't know if I
: could handle bringing another baby in this
: world and take the chance of it having to
: suffer. My daughter's case hasn't been that
: bad. She didn't need a trach or tube, just a
: palate repair and tubes at 10 months.
:
: The hardest part is the constant fear in the
: back of our minds about possible genetic. I
: want to know the truth... NO SUGAR COATING!
: Has anyone else been told its isolated, but
: have had repeated children with PRS? Does
: anyone else no of any causes (besides
: genetic)that can cause this! Thanks so much!
:
:
:
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