September 5th is PRS Awareness Day!
Pierre Robin (pronounced “Roban”) Sequence (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.
The small or displaced lower jaw also causes the tongue to be positioned at the back of the mouth, causing breathing difficulty at birth. For some patients, these physical characteristics may result from another syndrome or chromosomal condition. The most common is Stickler Syndrome. Kyrie’s was caused by the substance abuse of her biological mother.
PRS, like most birth defects, varies in severity from child to child. Some children may have more problems than others. Problems in breathing and feeding in early infancy are the most common.
Children affected with PRS are often slightly below average size, raising concerns of incomplete development due to chronic hypoxia related to upper airway obstruction as well as lack of nutrition due to early feeding difficulties or the development of an oral aversion.
Possible complications include: Breathing difficulties, especially when the child sleeps; Choking episodes; Congestive heart failure; Feeding difficulties; Low blood oxygen and brain damage (due to difficulty breathing); Pulmonary hypertension; and Death.
This little girl has endured so much, and fought for every day she has lived, for every breath she has taken.
She has had surgery after surgery, from the day she was born in jail and I received her blue as anything from the ambulance that morning she was rushed to the hospital. Kyrie’s twin sister did not survive, but her gift of anatomical tissues helped recreate some of Kyrie’s airway and mouth structure. We always honor that little one on this day, too, when we remember all Kyrie has endured.
That’s how we learned about PRS, when we had never heard of it before Kyrie came to us.
Prayers for this little one as she goes back to the hospital, out of state and a thousand miles from home, for more surgeries today and tomorrow. Your prayers have pulled her through from one miracle to the next, and we are so grateful. Your support, and encouragement, and prayers have lifted one little girl who could not have made it far in this life all alone.
Thank you. Really.