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
Leave a Reply
Donate to wolfhirschhorn.org
subscribe
Contribute Your Story
To share your story, create your LOGIN and sign in once you receive your password via email. After logging in, write your story, upload pictures and publish your story! It's that easy. If you would like to comment on our stories, you can comment without creating a login. Each comment is posted once approved. If you need help, please email us.WHS Growth Chart
In 2007, a WHS growth chart was created. Download the Wolf-Hirschhorn Syndrome Growth Chart here.Most Popular Topics
1st Birthday 2011 Easter Birthday contest results Dentist development Doctor Visits Early Intervention eating family feeding Feeding Tube food Fund Raiser Halloween Halloween 2011 Halloween Contest Holiday Hospital introduction IQ Kidney Transplant kidney ultrasound Magnolia milestones Nayana Parent Profile physical therapy pictures School scooting Seizures Siblings Sitting Position Social Media Special Needs Speech Therapy talking Therapy Top 10 List Unborn Child update video Walking Weight GainSelect Your Story
- Addilynn (2)
- Alexander (9)
- Alexia (2)
- Ali (1)
- Amelia (23)
- Ansel (1)
- Arianna (2)
- Arin Rae (16)
- Ava Lynn (8)
- Ava Ruby (1)
- Bethany (2)
- Blake (3)
- Brett (2)
- Brodie (15)
- Caroline (9)
- Casen (1)
- Cassidy Renee (2)
- Charity (1)
- Charlotte Ellen (1)
- Claire (3)
- Clover (3)
- Contest (19)
- Corrine (1)
- Corwin (2)
- Dakota (1)
- DeLaney (1)
- Deliany (1)
- Denise (3)
- Devin (3)
- Dylan (16)
- Elijah (4)
- Ellye (3)
- Elsa (32)
- Emily Rose (5)
- Emma (7)
- Esme (3)
- Esperanza (2)
- Evan (2)
- Eve (3)
- Evelina (1)
- Evvie (2)
- Featured Stories (14)
- Fiona (4)
- Frank (6)
- Fund Raiser (13)
- Garner (1)
- General Information (23)
- Giveaway (3)
- Grace (5)
- Halloween (28)
- Harry (1)
- Hayden (2)
- Isabella (4)
- Isabella N (6)
- Jaap (1)
- Jada (2)
- Jake (1)
- James Douglas (2)
- Jon York (1)
- Joseph (1)
- Juliana (2)
- Justin (1)
- Karly (4)
- Karson (2)
- Kaylee (13)
- Kayleen (1)
- Kendall (82)
- Kinga (2)
- Leo (2)
- Liam (7)
- Liam John (1)
- Lisa (3)
- Lists (2)
- Lucy (1)
- Madison (7)
- Magnolia (7)
- Marley (2)
- Marshall (1)
- Mason (3)
- Matilda (1)
- McKenzie (6)
- Mia Rose (27)
- Natalie (1)
- Nathan (1)
- Nathaniel (28)
- Nayana (3)
- News (3)
- Norrah (18)
- Olivia (1)
- Olivia Grace (6)
- Olivia Stella (1)
- Paisley (1)
- Parent Profile (2)
- Peyton (4)
- Quinn (2)
- Reese (1)
- Region Gatherings (2)
- Renee (1)
- Rheyn (6)
- Riley (6)
- Rochelle (3)
- Ryley (2)
- Sabrina (10)
- Savannah (1)
- Sergio (2)
- Shadyn (1)
- Social Media (10)
- Sophia (6)
- Talia (2)
- Talon (1)
- Tanner (13)
- Taylor (10)
- Taylor T (3)
- Teejay (4)
- Tommy (2)
- Tyler James (5)
- Tyler Jay (1)
- Unborn Child (7)
- Uncategorized (128)
- Vincent (1)
Google Ads 1
Google Ads 2
Google Ads 3
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!
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!
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.
Hi Nayana, welcome 🙂
signed Amariah’s mom
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