Ever since joining a wonderful group of fellow Omphalocele moms, I have seen this awareness movement grow exponentially.
It's a beautiful sight to behold.
We have a website this year, created by a fabulous Omphalocele adult:
Other moms are working toward forming a non-profit.
I will be walking with a team of other moms and supporters in the Dallas/Fort Worth area on April 12th for the March for Babies:
We also have a beautiful tribute video to Omphalocele Awareness here:
http://youtu.be/nNU7C_3gRjc
All of this is in an effort to being awareness to so many different people.
There are those in the medical field that are not as aware of the various treatments for Omphaloceles, which can lead to mismanagement.
I've heard so many heart-wrenching stories about mothers who in the same breath they first hear the word "Omphalocele" they hear the word "termination".
I personally had a very positive experience, but it seems sometimes that for every doctor that breaks the news gently and compassionately and presents all the options available without prejudice or leanings either way, there are dozens that insist termination is the best option or fail to give a realistic outcome.
Support is needed for mothers going through their journey into a new world of specialists, surgeons, NICU, and therapists. It is terrifying to learn your unborn baby has anything going on medically..... You hear this word that you've never even heard before, your heart is pounding and the tears begin to flow.
You can't know in that moment, that online there is a group called MOOs- Mothers of Omphaloceles, and there are 900+ members all over the world, ranging from mothers that just got a diagnosis a week ago, to Omphalocele survivors with children of their own. There, you can share your dreams and fears for your beautiful baby with other mothers. You can grieve, ask questions and build knowledge and contacts. You can see the treatments that have worked and the ones that do not.
Mothers of Omphalocele angels are online too, sharing their stories and experiences.
Each and every story we share brings us closer to answers.
Because Omphaloceles are relatively rare, it seems that there has been very little research done.
What research we see published and accepted by the medical community can be outdated and not as effective as some of the treatments we've seen in our support group work time and again.
This is another reason for spreading awareness.
We, as mothers, want to know what went WRONG. We don't want to see others going through this, and if we can keep it from happening, we want to everything we can.
We also want to see more information about treatment of Omphaloceles be made available to every medical professional involved.
So many doctors, nurses, and therapists have told me that Evan was their first Omphalocele baby to work with.
Omphaloceles provide a unique challenge in that when the organs develop outside the abdomen, the chest cavity and abdomen do not necessarily have enough room to fit "everything back in" without causing undue pressure.
Complications arise, involving the lungs and heart. The babies may suffer from a number of issues involving their heart, lungs, and digestive systems.
Delays due to lengthy hospitalization, lack of tummy time, sensory problems, feeding issues, chronic respiratory problems..... All this can affect a child with an Omphalocele.
It's not all doom and gloom, of course.
We have beautiful babies. Sometimes the outcome is the very best anyone could hope for.
As mothers, we simply want the very best for our children. This includes care from doctors and medical staff, from their peers growing up, and from other parents.
I hope that next year we will have even better news to report. I hope to see more people embracing a state of awareness.
#omphaloceleawareness
#omphaloceleawarenessday
#omphalocele
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