Monday, February 3, 2003

I am going to start a series of posts called "Anyka's Life Story". I believe that there are people out there who can benefit from this story. So I begin here, on the day and time of Anyka's birth. We don't know it yet, but Anyka was born with Pierre Robin Sequence...

http://www.faces-cranio.org/Disord/PierreRobin.htm

What is Pierre Robin?
Pierre Robin is not a syndrome or a disease. It is usually referred to as Pierre Robin Sequence, although it is also know as "Pierre Robin Malformation Sequence", "Robin Anomalad", and "Cleft Palate, Micrognathia and Glossoptosis." It is the name given to the following birth defects if they appear together:
small lower jaw (micrognathia)
a tongue which tens to ball up at the back of the mouth and fall back towards the throat (glossoptosis)
breathing problems
horsehoe-shaped cleft palate may or may not be present
Why did this happen?
Doctors do no know exactly why Pierre Robin occurs. They do not believe it is the result of anything the mother did or did not do during pregnancy. If the child only has Pierre Robin, many experts believe that it is the result of the positioning of the fetus in the early weeks of pregnancy.
Will this happen to children I have in the future?
Pierre Robin does not tend to run in families. The chances of you having another child with Pierre Robin are very small, unless the Pierre Robin Sequence is a part of a syndrome.
What kinds of problems could my child have?
In addition to the physical characteristics common to Pierre Robin, your child may have the following problems:
feeding problems in infancy
ear infections
reduced hearing
about 40% of infants with Pierre Robin have Stickler Syndrome and about 15% have Velocardiofacial Syndrome. FACES recommends genetic testing be done to determine if your infant has either of these associated syndromes. The Pierre Robin Network has excellent information concerning genetic testing for babies born with Pierre Robin Sequence.
Will my child need surgery?
Depending on the severity of Pierre Robin, your child may have some or all of the following surgeries:
surgery to repair the cleft palate
special devices to protect the airway and aid in feeding
surgery to improve breathing
the small jaw associated with Pierre Robin usually grows out on its own during the first two years, and usually no surgery is necessary on the jaw.

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