This one is about: Pierre Robin - Short Chins
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Over the period of a few weeks, various parents of children with Pierre Robin discussed things. This is the 5th in a series of 6. If you would like to meet some of these parents I suggest you join Cleft-Talk - the email discussion group.
I was wondering, with all this talk about Pierre Robin, could a
child be labeled this and not have it??? Amanda was born with a "minor"
cleft (comparatively speaking) and Pierre Robin. She did have a very short chin but
no down placed tongue, no breathing problems, no feeding problems (other than not
being able to suck very well). The roof of her mouth was missing the center section
and all of the soft palate, not the usual complete horse shoe. She had the sides of
the roof of her mouth just not the narrow joining section at the peak of the mouth
(does that make sense). Everyone (doctors) said she had PR but after 1 year you can't
tell this angel ever had anything wrong with her mouth. Her father has a short chin
and so does his father, so I'm wondering if this could be a positional fluke, in that
she had her hands at her face in utero, which kept the tongue up to far, then after
birth the jaw fixed itself. She had none of the typical things that go along with PR
(thank heavens). I'm questioning the diagnosis (not that it will change much). I
guess it's more curiosity than anything! I'm sure there are a lot of opinions out
I would guess it depends on the doctors that saw her at birth and their experience with what is and what isn't Pierre Robin. The ped that attended Justine at birth barely knew what it was and I know he had no experience of it. He had to call the larger hospital in the area when they heard the breathing problems and a cleft they knew what it was and
advised him what to do which was place her prone and ship her on over to their NICU. The comical thing was when I saw her the next day after a nite of hell listening to the problems they were having trying to help her breathe, I walked in and a resp. tech. had her sitting upright, holding her bottom jaw out so her tongue would not obstruct her airway.
(If they were so hell bent on putting every baby on it's back because of SIDS they wouldn't have had all the problems they did that nite.) After she got to the NICU at our larger hospital they had a chapter out of a text book copied and ready for us. In it was a lot of technical stuff and picture of a baby that was extremely affected by PR. Its profile looked like a bird. It had no chin at all. I'm hoping I get her Halloween pictures back in time to display in the Halloween Gallery so you can see she doesn't look like a bird. ;~)
The next day, her first day in the NICU, she was resting
comfortable on her belly. They had the bed raised at an angle. In the hospital and
later, at home, she slept on an angle (at home we used a foam wedge) and we used a
"reflux harness" so she wouldn't slide around. Later that nite (I think or
it may have been the next day) she had her first meal through her OG tube and she
upchucked the whole amount. I thought she was going to die right then and there. I
think the nurse did too. She absolutely could not breathe. It totally took her breath
away and every time she tried to recuperate more vomit would overwhelm her. Her
little eyes were bugged out and her arms and legs were flailing. The nurse was
suctioning and I was giving her blow by until she could breathe again. Later on the
way home I was telling my mom, who was in the waiting room at the time with Vincent,
and I couldn't even finish. I saw her little bugged out eyes in my mind and I bawled.
It really hit me how horrible this disorder can be. The concern for her cleft totally
disappeared. I really didn't think about her cleft much until we started going to the
clinic and thinking about surgery. To me it was the least of her problems. Back in
1822 when old Pierre Robin first pieced together the symptoms of small jaw, downplace
tongue, and cleft in the babies with breathing problems that related to them, I'm
wondering just how many of those affected babies survived.
Short answer - - yes. And you can have it and not be diagnosed. One child I nearly adopted (the one before Jacob) was diagnosed only with a "wide cleft palate" but knowing now what I know, and having the picture in hand, I'd bet my bottom dollar that little boy had PRS. (Also had a very small chin and breathing difficulties.)
Some PRS children are fortunate enough to have their children's jaws grow out. I have been quoted (by doctors) that usually by the age of three the chin catches up with the rest of the child's facial features....Meghann's unfortunately has not caught up completely although it is much better than at birth. (She's 9)
It is also possible that a combination of genetics and positioning did cause the PRS....kind of a genetic tendency towards the small chins anyway and then an added plus of the positioning .. giving it enough of a umph to cause the recessed jaw (short chin) and cleft palate. More than likely your main concerns in the future will be cleft related rather than PRS related.
As a side note...I don't know what surgeries Amanda has had...If she has not had any I would be sure to mention that she was born with PRS. Airway problems may be present...On the other hand they might not be, but I would make sure that the anesthesiologist knows that your daughter was born with it. Better prepared and not needing it, then needing it and not being prepared.
I don't know if this helped at all, but here it is.
Just adding my 2 cents. Pierce's chin has grown out and he is undistinguishable from any other 11 year old. (When I get graphics on the computer I hope to have David put up his pics on the Web page.)
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