Our journey defined

Lauren & CharlotteOn March 21st, 2006, our daughter, Charlotte Elizabeth was born at 220pm. At approximately 3pm, it was discovered she had a cleft palate and she was ultimately diagnosed with Pierre Robin Sequence. She spent the first month of her life in NICU in ATL and I began exclusively pumping breastmilk for her the day she was born and haven’t stopped yet. (It’s going on 5 months now) She finally had her cleft repair on August 21st and I am hoping we will be able to breastfeed. I feel I owe it to other mothers to share our experience so that they may learn from it. This is our journey.

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2 Comments

  1. Kelly Wilcox said,

    Our baby boy, Brody, was born on November 29, 2007. He was diagnosed with Pierre Robin Sequece and also has a cleft palate. He is still in the NICU and I have been pumping breastmilk for him. The doctors thought he may need to have a trach, but his condition has improved since his birth. Today, they just started feeding him through an oral gastric tube and are trying to use a haberman bottle.

    If you have anything else to share regarding feeding or the condition in general, please e-mail me.

    Thanks,

    Kelly Wilcox

  2. siobhan harper said,

    hi my son two was born with pierre robin syndrome when he was born he could not breath so he has a nasalfageal air was in .he was descharged from hospital 6 weeks later with a airway and feeding tube he is now 6 month and taking most milk my sqezzy bottle and the rest down the tube. im now trying to get him onto solids but he hates it it coms back out his nose so he wont take done now.does this get better when they have had opparation he wont get his till october

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