Our journey with Beckwith-Wiedemann Syndrome and the struggles with feeding issues related to macroglossia and tongue reduction surgery. I hope you find strength and encouragement from reading our story.
Feeding…it is the one thing a parent should be able to provide for their child. It’s something most parents don’t even think twice about. So what are you supposed to do when your baby has issues with feeding? It is not only a constant battle, but an emotional rollercoaster with the guilt you feel for not being able to provide the one basic thing a mother should be able to do.
Read MoreOur world forever changed when our son Jacob was born. He came 3 weeks early and everything seemed to be fine until a few hours after his birth when the doctors came into our hospital room and began discussing signs that our son had a chromosome disorder. It was the most difficult situation I have ever had to face.
We felt scared, alone, and helpless. I spent countless hours trying to find resources, support, and learn all I can about his diagnosis with Beckwith-Wiedemann Syndrome.
It is my intent to create a website where parents of children with BWS can find all the information you are looking for because the last thing you need as a sleep-deprived parent with a newborn is to be spending countless hours on google!
I pray that you may find comfort in knowing you are not alone in your journey with BWS, and that you are able to discover that life is beautiful beyond the diagnosis.
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