FAQ - pierre robin syndrome
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pierre robin syndrome occures every how many live birthes?

1 per 8500 live births  (+ info)

pierre robin syndrome?

did anyone have a trach? at what age did it come out? is it genetic?

Pierre Robin is not a genetic condition. There is controversy over what may cause it.
As PRS is not caused by a single defect gene, it is not a genetic syndrome, but rather a chain of certain developmental malformations, one entailing the next.
The syndrome is generally diagnosed shortly after birth. It has an incidence ranging from 1 in 8500 to 1 in 30,000.  (+ info)

will my neice grow out of her pierre robin sequence?

My neice was born last night =) and she has pierre robin sequence. I guess theres a hole in the roof of her mouth, and she does have a veryy small chin...but its not EXTREMELY severe. I was looking at pictures on google of children with tubes and such coming out of there throat. will this happen to my neice? will her chin grow out as she gets older and look the same as any other little girl? they are giving her surgery to fix the cleft pallette, but not until shes 10 months.

My cousins daughter was born one year ago TODAY with the same disorder!! She went through a few surgeries and spent time (2-3 months) in the hospital, but is now a healthy and vibrant 1 year old.

They first did a surgery around 1.5-2 months. The put spacers in her jaw for it to grow properly. There were metal rods sticking out of her jaws in 4 places where they adjusted them. She went home a few weeks after that surgery.

She could only sleep on her belly, if she was on her back, her tongue would flop back in her throat blocking her breathing. She went home with an apnea monitor.

At 5 months, they did another minor surgery on her jaw/chin area with no complications.

At 9 months, they did the surgery to fix the cleft palette.

You can't even see where her scars from surgery were, she healed just fine. She still does have a small chin and jaw, but doctors think she will grow into it. She will probably need one more surgery.

When she came home, she needed to drink out of special bottles due to the hole in the palette. If she drank too much or too fast, she would spit it up through her nose. She needed to be off the bottle before the surgery for the palette, otherwise the sucking would open the stitches.

We are glad she made it through all the problems. I wish the best for your neice. Any other questions, please email me!!  (+ info)

Pierre Robin Sequence / Cleft Palate speech question?

Trying to get a better understanding of my daughters likelihood of having speech problems or a lasting speech impediment
She is almost 18months old and has had her palate repaired. She is in speech therapy but is about 9 months behind in speech. I am looking for answers from someone who either has had a cleft or really knows someone who has. I have scoured the internet myself.

thank you

  (+ info)

incidence of Pierre Robin syndreme?

The specific causes of Pierre Robin syndrome are unknown. It may be part of many genetic syndromes. The lower jaw develops slowly over the first few months of life before birth, but speeds up during the first year after birth. The falling back of the tongue may cause choking episodes and feeding and breathing difficulties, especially when the child sleeps.  (+ info)

What are the chances of a cleft palate in second child?

My husband and I have an 8 month old son with Pierre Robin Syndrome (PRS) which includes a cleft palate. We are considering having a second child but would like to know the chances of hat one also having PRS with the cleft palate. Does anyone know this? Any inf will be very helpful.

i looked this syndrome up on wikipeda.
it says it is not a genetic condition and that the odds of a child have the problem is 1 in 8,500 or 1 in 30,000.
so to me this sounds like it would be pretty rare if your next child has the same problems.

hope this helped!
xx  (+ info)

What is the name of the syndrome that the person may appear to have facial characteristics of down's syndrome?

I previously watched a documentary about sufferers of a syndrome whose facial features appeared to be down's syndrome but it wasn't down's syndrome. The grow to be quite large adults and have special needs. Does anyone know the name of this condition?

Klinefelter syndrome  (+ info)

Are there different types of Down syndrome and what areas of the body does Down syndrome affect? ?

Also, are there any significant statistics related to Down syndrome? Has Down syndrome received any recent attention from the media? Are there any famous people that have Down syndrome.
Answer as many of the above questions as possible.

There are three types of Down syndrome, garden variety Trisomy 21, mosaicism and translocation.

Read more at:

Welcoming Babies with Down Syndrome (English, Spanish, French)

There is a slide show that also incorporates videos of the featured 'More Alike than Different' cast at the National Down Syndrome Congress website:


And great information at the National Down Syndrome Society website:
Down Syndrome Fact Sheet

You might also enjoy

Margaret's Guide to Down Syndrome

For bios of actors with Down syndrome, see:

Down Syndrome and the Acting Gene


DS in Arts and Media


Michael Johnson


Sujeet Desai

Down Syndrome Links at the Family Village website

Check out this recent New York Times article:

The DNA Age: Prenatal Test Puts Down Syndrome in Hard Focus

Have fun with your research!
  (+ info)

What is so bad about having down syndrome?

I think people are a lot colder than they want you to believe. Too many pregnancies prediagnosed with down syndrome are terminated! Doctors tell people that their kid will be like some animal and people believe them. I've met my share of people with down syndrome, and they all seem pretty human to me. On top of that, they were all decent folks, which is a lot more than I can say for the general population. And how does knowing that unborn children are purged because of down syndrome affect those who were born and have down syndrome?

WOW!! I'm so glad that there are other people who's lives have been touched as mine has. See when I was 28 I gave birth to twin girls and one of them was born with Mosaic down syndrome. Of course, I didn't know much about it til now....and yes I was shocked. They are 14 months old now, and such a blessing as well as my two boys. My daughter is about 4 months behind in her milestones, but she is always so happy! Out of all my kids she is the easiest to handle.

It's always nice to have other people, who see that they are more alike, then different from the rest of us.  (+ info)

What is the syndrome called when you cannot feel physical pain?

I remember watching a show a long time ago, and this one little girl was born with a syndrome where she could never feel pain. If she fell on the floor and cut her knee, she wouldn't cry, whereas most children would.

What is this called? Is it a syndrome? Is it a medical condition? I just want to know what it's called, and I can do the research on it.

It is for a story I am writing but I don't entirely know what it is.

It's called "congenital insensitivity to pain"  (+ info)

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