I have a 10-month old that was born with PRS and like you, I had a c-section and had to be transferred to another hospital. It is the worst feeling in the world at first, not knowing what is hapening, what to expect, wondering why you don't have your new baby in your arms. I had a very difficult time those first months but you've taken the best first step by posting to this site. I have used it many, many times throughout the last 10-months. My biggest piece of advice for you is to be your child's advocate, make sure you know all the options before you decide anything...even when the doctors suggest that you do something...know and understand why and get a second opinion. I learned that different hospitals do different things with PRS babies based on their experience with them and the doctors tolerance levels. Our daughter was born with a very severe underdeveloped chin and could not breathe right away due to the small chin, small airway and her tongue falling back. She did not have a jaw distraction, a lip/tongue adhesion or a trach and was able to leave the hospital in 3 weeks (on a monitor and other aids). Now every baby is different but some docs are quick to do a distraction or a trach when sometimes the child just needs some time to grow. As I said, we had an extreme case and we were able to make it through without any extreme measures. I would be happy to talk with you further about this. It involved some experipenting on the doctor's part and our constant involvement with this in the NICU. All hospitals are different, and have certain regulations about what the baby is allowed to go home with. We were at Georgetown Univ. Hospital in Washington, DC. Where are you?
I would be hapy to talk with you or you can email me anytime of the day becasue I'm sure the last thing you want to do is speak to a stranger right now. I did a lot of emailing those first few months. I'm happy to share our entire story or just answer some questions. Every PRS case is so different but talking to lots of different parents to start is good and you will find ones that you like talking to more than others.
Best wishes for you and your family during this difficult time. You are in my thoughts. Email me anytime at firstname.lastname@example.org
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