Nayana was born May 23,2012. We found out she had WHS via an amnio after an ultrasound found she had a bilateral cleft lip and palette and that she  seemed to be growing at a slower rate then she should have been.

The months following the diagnosis were filled with denial,depression,and then by the time she was born,acceptance.The genetics councilor who delivered the news to us offered us this website to check out.It took a while for me to get the courage up to actually check it out nd when i did i cried the first few times i did.Reading the stories of other families dealing with this syndrome made me feel a lot more hopeful about the future though.

Even still,we were surprised when she was born relatively healthy considering the circumstances and the fat that the doctors had such a bleak outlook on the future.

Shes only two weeks old nd i couldnt imagine life without her.Shes the best thing i couldve asked for and we’re just taking it day by day.I must admit though I’m terrified of the seizures that are to come.

    – til the next updte



5 Responses to Intro -Nayana C. Ordonez

  1. Heather (Frankie's mom) says:

    Welcome to the group. I think you’ll find this group to be a great resource for information as well as encouragement. And may her good health continue!

  2. Heather18 says:

    Welcome! I’m so glad the site has provided some comfort to you, even while it might have also shown realities that were different than your original expectations when you were pregnant. The one thing I’ve heard all parents of WHS kids say again and again is: our kids are very affectionate! Socially and emotionally, I think they are something special! Fiona is emotionally intuitive, and very connective. She’s a delight. I’m thrilled to learn that you’re enjoying the first weeks of your little one’s life. And the seizures–they aren’t inevitable, and if they do come, there are ways to manage them, and your little one will be okay. Cheers, and hello!

  3. letty says:

    First of all……WELCOME! My son was born with bilateral cleft lip and palate, also found at my ultrasound. We went through all the same emotions before, durring, and after…..still going through mixed emotions from time to time. Of course, no two babies are the same. I’m sure you’ve heard that multiple times, but the stories on this website give me hope that my sons future is bright. It has also been great therapy for me. If something new comes up and I don’t have anyone to talk to, just posting an update makes me feel so much better. I can’t wait to read your posts and see pictures. Congratulations on your new arrival.

  4. La Tosha says:

    Hi Nayana, welcome 🙂

    signed Amariah’s mom

  5. BiancaR says:

    I just wanted to thank everybody for their comments and support.You cant imagine how much comfort it provides me knowing there are people out there that understand

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