- Williams Syndrome
- Interviews
Keturah's interview
How did all start?
So my daughter, Tay, was born at 35.5 gestation. She was underweight, couldn't feed properly, It was at her 3 month checkup they notoced a heart murmur and i had complained of inguinal hernias. We monitor her heart rate and at her 6 month heart checkup the Cardiologist asked me of her fathers nationality. He then stated his reason for that question was due to her eye shape, nose, heart murmur and hernia. We always based her eyes on family shape. He then told me the nane WS and it brought my thoughts back to when she was 4 months old and I was cuddling her to sleep and I was gazing at her and I knew there was something more special something more unique about her but believed the drs would have picked it up by now.
So a little before her first birthday (June 2016) another I spoke with her pediatrician and my concerns and got DNA resting done that day. September 2016 Recieved a phone call confirming diagnosis.
I was shattered. And so worried. I cried so much as I felt I failed her in some way.
Do you already have a diagnosis? How long did it take you to get it?
Yes, roughly 3 months. Mother and Father DNA testing negative results.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Inguinal Hernias
What has been the most useful thing for you so far?
Facebook Williams Syndrome support pages. Hearing other parents stories and childs success' has helped me.
What have been your biggest difficulties?
Baby - Hitting milestones, transition of foods, sleep pattern.
Toddler (1-now2) - Speech, behind an average 2 almost 3 yr old. Hes stubbornness to not try nee things sensory issues. Nothing major.
How has your social and family environment reacted? Have your social or family relationships changed?
People are quick to say she doesnt look like there's something wrong but are always ready to ask why she is not doing certain things.
Mu friends are interested in Williams Syndrome and have teaf up on it. My family all are understanding and wanting to know more. Her dads family are more on the side of but look at her theres nothing wrong with her. Her preschool need to educate themselves a little more.
What things have you stopped doing?
I have stopped comparing her to the average 2/3 year old. Stop being sad about the diagnosis and have embraced it.
What do you think about the future?
I am excited to see what the future brings. Tay's personality is so much fun and she has so much love and admiration for people and is such a social butterfly that I cannot wait to see where she leads us.
If you had to describe your life in a sentence, what would it be?
Tay is a fun, caring and extremely loving toddler.
