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Beckwith-Wiedemann Syndrome Awareness
Rabbit Skins Infant One-piece
- Sizes Newborn - 24M
About this campaign
Haddie and I have it in our hearts to raise awareness for BWS and share some special items that provided comfort during her journey through tongue reduction surgery. Haddie's Smile Box is how we intend to do so. Each box will be filled with the things we found so very helpful during this tough time. We will pack them up and get them shipped off to families ready to embark on their own journey with tongue reduction.
In September 2011 our lives were forever changed by the birth of the most precious baby girl on earth... a bit partial we are of course :P We noticed one more thing other than her incredible beauty that seemed a little out of the ordinary. Her tongue stuck out all the time.And as the days went on it just kept getting bigger. Her pediatrician sent us to Children's Hospital Los Angeles where we were told that she has Beckwith Wiedemann Syndrome.
Beckwith-Wiedemann syndrome (BWS) is a genetic disorder commonly characterized by overgrowth. The disorder's severity varies widely in children. Patients usually come to medical attention because they are born with several features that occur together. However, few children have all the characteristics associated with the syndrome. Some of the features in BWS patients include: Large birth weight and length overgrowth of one side of the body (hemihypertrophy). An enlarged tongue (macroglossia). Low levels of sugar in bloodstream (hypoglycemia) during the newborn period. Defects in the abdominal wall (such as omphalocele, diastis recti, umbilical hernia). Enlarged abdominal organs, such as the kidneys, liver and pancreas. Pits or creases in the earlobe or behind the ear. An increased risk of developing certain cancers during childhood such as Hepatoblastoma, Wilms Tumor and Rhabdomyosarcoma.
One major obstacle for these precious babies is to overcome the Macroglossia. Many families choose to have a surgery done by a plastic surgeon to reduce the size of the tongue. For Haddie this surgery was not only necessary but crucial to her quality of life. If you are interested in reading about her journey through Tongue Reduction you can do so here
Through this journey we learned a few things. Like certain toys that made life in the hospital just a little bit easier and just the right bibs to catch the copious amounts of drool.... think swimming pool! ... and spoons for feeding after surgery that made feeds just a little bit easier.
And now we want to share these goodies with as many families as we can. Will you help us?
Any remaining proceeds will be donated to the Beckwith-Wiedmenn Children's Foundation
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