Happy Omphalocele Awareness Day!

Words I never thought I'd say, for a day I never knew existed last January 31st!  But this year, and all the years from now on, will be different.  

This is Molly's day.  Today we honor our brave little beauty for her triumphs in her first 34 days of life, and for her strength to face the challenges that lie ahead of her.  You are an amazing miracle, Molly!

Molly in her black & white

Join us in wearing Black & White to raise awareness and to honor Molly.  To learn more about O Awareness, here's the PSA (adapted) from the Mothers of Omphaloceles (a group we are a part of):

JOIN US AS WE CELEBRATE

OMPHALOCELE AWARENESS DAY!

JANUARY 31, 2013

Who are we? We are the Mothers of Omphaloceles, also known as The MOOs. We are parents, grandparents, family and friends, over 600 strong, who are all connected by a birth defect known as omphalocele. Some of us are anxiously awaiting the arrival of our special “O” babies. Many of us have young children and teenagers who were born with the condition. There are several of us who were born with an “O” and are now grown adults, some with children of our own. And there are the parents of “O” angels. We have come together from all across the world to form a community of strength and support. Today we are asking for your help to spread awareness about omphalocele.

What is an Omphalocele? It is a birth defect in which the abdominal wall does not close properly, allowing abdominal organs to protrude into the umbilical cord. In some parts of the world it is referred to as an exomphalos. It is often detected between the 12th and 20th weeks of pregnancy. It is estimated that a small omphalocele occurs in 1 out of every 5,000 births, a large omphalocele 1 in 10,000. At this time there is no confirmed cause for the condition, and no cure.

There is still a lot of misinformation about omphalocele. With the latest treatments the prognosis for our children is good. But many medical professionals are unaware of those treatments. Many of us are told that, even without other defects, our babies will not survive. Many of us are advised to end our pregnancies. We are told that our children will most definitely be born with additional complications. But what we have learned in our community is that our children CAN and often DO survive when given a chance. With advancements in pre-natal screening and treatment options, including surgery and non-operative management (aka Paint and Wait), the mortality rate is drastically reduced, and more of our babies are living and thriving.

Today we are asking for your help in sharing this message. Share it with your family and friends, and help us reach others dealing with this diagnosis. Share it with medical professionals, especially those involved in treating our babies, so that they know to give our babies the best chance possible at a normal life. And most importantly, help us spread HOPE.