Hello there, I live in the Washington, DC area and have a 21-month old daughter(Maya) who was born with PRS and spent the first 3 weeks of her life in the NIVU. We used the Haberman up until her palate surgery (done at 7 months) and had great success. I'm quite late in responding to this post but I wanted to touch base because you mentioned being in the DC area. We spent a lot of time doing research and met with 2-3 different doctors for each of Maya's issues...ENT, Plastic Surgery, Genetics, PT, Ophthalmologist, etc. If you ever want any references or need local info I'd be happy to share our experience with you. We chose different docs at different hospitals for different reasons. We go to Children's, Georgetown and had her surgery at INOVA. What hospital were you in the NICU? Feel free to contact me anytime at firstname.lastname@example.org or my cell phone is 703.582.0859.
I would love to speak with you if you are interested, any time. When we had Maya it was the hardest time of my life and it was a very rough 1st year. I truly relied on others who had been through the a similar situation, like many on this site. We made it through and now we have an amazing little girl on our hands.
Let me know if I can help in any way.
« Back to index
If you would like to join our email group, please check out our home page at www.pierrerobin.org and follow the instructions there. We would love to have you.