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Pierre Robin Syndrome prognosis

What is the prognosis if you have Pierre Robin Syndrome? Quality of life, limitations and expectatios of someone with Pierre Robin Syndrome.

Pierre Robin Syndrome prognosis

Pierre Robin Syndrome (PRS) is a rare congenital condition characterized by a combination of three main features: a small lower jaw (micrognathia), a tongue that falls back into the throat (glossoptosis), and a cleft palate. These abnormalities can lead to various complications and challenges for affected individuals.



The prognosis of Pierre Robin Syndrome can vary significantly depending on the severity of the condition and the presence of associated health issues. Infants with PRS may experience difficulties with breathing, feeding, and overall growth due to the compromised airway and impaired ability to suckle or swallow effectively. Prompt medical intervention is crucial to address these immediate concerns and ensure the well-being of the child.



With appropriate medical management, including close monitoring and intervention by a multidisciplinary team of specialists, the long-term prognosis for individuals with Pierre Robin Syndrome can be favorable. Many infants with mild to moderate cases of PRS show improvement as they grow, with the jaw and airway developing and maturing over time. Early interventions such as positioning techniques, feeding modifications, and the use of specialized devices like nasopharyngeal airways or mandibular distraction osteogenesis can help alleviate breathing and feeding difficulties.



However, it is important to note that some individuals with severe forms of PRS may require more extensive interventions, such as surgical procedures to address airway obstruction or correct jaw and palate abnormalities. These interventions aim to improve breathing, speech, and overall quality of life.



While the prognosis for Pierre Robin Syndrome can be positive, it is essential for individuals with PRS to receive ongoing medical care and support throughout their lives. Regular follow-up appointments with specialists, including pediatricians, otolaryngologists, and speech therapists, can help monitor growth, development, and address any potential complications or challenges that may arise.


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Stories of Pierre Robin Syndrome

PIERRE ROBIN SYNDROME STORIES
Pierre Robin Syndrome stories
I started this foundation to create awareness for the syndrome as my son was born with the condition in October 2008. The Story of Joshua Parkes and how this foundation came into being. Joshua was born on the 20th October 2008, the happiest day ev...
Pierre Robin Syndrome stories
HELLO EVERYONE MY SON WAS BORN THE 3/3/16. MY SON IS 6 MONTHS OLD ALMOST 7MONTHS OLD HE HAS MICROCEPHALY,  LARYNGOMALICA, DANCING EYES, VOCAL CORD PALSY, BRAIN ATROPHY, PRS (PIERRE ROBIN SEQUENCE) AND A HIGH PALATE, SLEEP APNEA, BREATHING PROBLEMS....
Pierre Robin Syndrome stories
My daughter was born with mild PRS and a cleft soft palate. 
Pierre Robin Syndrome stories
My son Bernard (little B) was born on Aug. 2 2014. We had no idea at time of birth that anything was wrong with him. I had a scheduled C-section for Aug. 24 but he decided to come early. As I was laying on the operating table I heard a faint whimper ...
Pierre Robin Syndrome stories
My daughter was born 1/12/2010 midwife led birthing center flat and unresponsive. She required cpr and quickly and immediate transfer to the neonatal intensive care unit. She was then diagnosed with Pierre robin yndrome, microcargnathia and horse sho...

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