Hello, my name is Ashley, on October 2, 2009, my second child was born. A little girl we named Tiffanie Hart. During ultrasounds we discovered that she had a smaller jaw than normal. My son, James, who was born in August 2007 also had a small jaw and was healthy. The doctors never told us there was a problem with him so when we discovered Tiffanie had the same jaw we weren't too concerned. While they were cleaning her off she started to turn blue. A nurse had opened her mouth and pulled her tongue forward out of her throat. That is when they discovered that her tongue was farther back than normal and that she also had a cleft palate. We were shocked. Within 2 hours of being born, Tiffanie was life flighted to Pittsburgh Children's Hospital. She spent her first 2 weeks of life in the NICU. On October 15th she had her first surgery, a Mic-Key button was placed in her abdomen and they also did a Nissan Fundoplication (Surgery for acid reflux). She was able to finally come home on October 23rd. It took us awhile to get use to the feeding machine and the apnea montior that she was equipped with. After 1 year she no longer had to have the apnea monitor, but had to remain on the feeding machine. Today at age of 18 months Tiffanie is still only 15.5 lbs and is just learning how to stand and walk. Last month she was scheduled to have the cleft repair done, but during a sleep study we discovered that she stops breathing multiple times. The doctors decided that the best thing for her would be to have the Jaw Distraction surgery done first. Tiffanie is scheduled to have the Jaw surgery on April 21, 2011. We were told that she would be in the hospital for at least 1 week and for the first few days she will be left sedated while the breating tube stays in place, just in case swelling occurs so it will not block her airway. We were informed that she will return in 4 months to have the device removed and that if there is no major complications they will perform the cleft repair the same day. Tiffanie is a sweet and wonderful little girl and she acts like nothing is different about her. We can't wait until she is free and clear of the feeding machine and clear of all surgeries. As for my son, he is a normal, healthy 3 year old, but when he gets older he could have to have reconstructive surgery to have his teeth aligned. I am also pregnant with my 3rd child and I'm due June 3, 2011. Luckily for us, the doctors have seen no clues to a small jaw or a cleft palate. Hopefully they are right and we do not have to go through all of this again.
Hi. I had a baby boy and he was also diagnosed with pierre robin. He was born on July 29th and after 2 weeks they put in a trach. He is now in a rehab hospital where I am learning to take care of him, trach and tube feedings. Doctors want to wait until he grows a little more to do the mandible distraction. Can you tell me what to expect? your feelings? Do you have any before and after pictures?
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