My twins, Cadia Susanne and Carmen Alberta, were born on Thanksgiving Day, 2006.  At 34 weeks, they were premature.  Carmen was born with Pierre Robin Sequence (PRS).  PRS is characterized by a combination of three features, possibly due to the underdevelopment of the lower jaw.

The lower jaw is abnormally small, the tongue is displaced downwards, and there is an abnormal opening in the roof of the mouth.  The tongue might have a tendency to ball up in the back of the mouth causing the airway to block and cause possible apnea. 

This is what happened to our daughter, and as a result, she required a tracheotomy and a feeding tube. 

Cadia was born with no problems other than being premature, and she was only in the NICU for 11 days.  Carmen spent 68 days in the NICU and requires nursing care. 

There is no known cause for PRS, and it is not something you can necessarily see on an ultrasound, although looking back, we do notice that her chin was down towards her chest, but that is not something that the ultrasound technician would usually notice. 

It was a bit overwhelming to say the least, especially for first-time parents.  When we brought her home there was so much information - cleaning her trach & feeding tube site, changing the trach, feeding her through a tube, suctioning her trach, having her on an apnea monitor and then having strangers in your house while you are sleeping to take care of her.  And all the supplies!! 

And you want to make sure that her twin gets enough attention, also.  She has so many doctor appointments - her regular pediatrician, her ENT doctor, cardiologist, pulmonologist, plastic surgeon, gastroenterologist, ophthalmologist, feeding therapist, physical therapist. 

Well, here we are, 6 1/2 months later, and she is doing just fine.  Her progress has been nothing but astounding.  She is consistently gaining weight; she is off the monitor.  She's moving around, rolling over and interacting with her sister, and we are about six months away from having her cleft palate repaired and then the trach and feeding tube will hopefully be removed a few months from then. 

She has even started to make sounds around her trach and judging from her facial expressions, she is quite proud of herself when she does.  My husband and I are now pros with her care, and we've formed relationships with our nurses and have had such a great support system from family and friends. 

We have been blessed with two wonderful and beautiful girls and we look forward to watching them grow and bond as sisters.

Lisa Wiseman

Wyoming, Michigan