Tuesday, January 31, 2012

Omphalocele Awareness Day

Today is Omphalocele Awareness Day.

An omphalocele is a birth defect that occurs early in pregnancy, in which the abdominal wall does not close properly, and some or most of the abdominal organs protrude into the umbilical cord. A smaller omphalocele occurs in 1 of every 5,000 pregnancies, whereas a large omphalocele occurs in 1 of every 10,000, and is typically diagnosed through an ultrasound. An omphalocele may be isolated, or may be associated with other defects and/or chromosomal abnormalities.

Despite the challenges a baby born with an omphalocele may face, there is much hope for them! We are here to inform parents and members of the medical community that our children are survivors, and with appropriate treatment, they can go on to live happy, healthy lives!

I have mentioned the support group that I am a part of- "Moms of Omphaloceles". I cant tell you what a blessing they have been in my life.. and I dont really "know" any of them. However, we all have a common bond, having a baby with an omphalocele. We share many of the same fears and questions for our babies. We also share the same hope that our children will live normal, healthy lives, regardless of their starts.

One thing that is the same with all of our babies, regardless of the size of their omphalocele, is that our children are fighters. Unfortunately, there is not a TON of research done about an omphalocele.. what causes it, etc. Like my doctor told me, "its a big deal". Its scary, and ALOT can go wrong. With an omphalocele, there is a bigger chance that there could be even bigger issues. Because of the lack of knowledge, and because of the "what ifs"... there are some doctors that, to this day, will encourage parents to terminate the pregnancies because of the omphalocele.

This BREAKS MY HEART. First of all, Craig and I did not know much when we found out about McKinleys diagnosis.. and we both dealt with it TOTALLY differently. But one thing we knew.. she was our daughter. No diagnosis was going to change that. We were her parents. And our job was to ensure that we had the best medical team ready to take care of her and give her a CHANCE to FIGHT. And those of you who have been our prayers warriors through this entire journey, know that McKinley was and continues to be quite the fighter.

We did not have a doctor, who encouraged terminating our pregnancy with McKinley, thankfully. But, as I have learned being a part of this support group. We are in the minority. Awareness has to continue to be spread about this condition. Not only to parents who have to walk through this journey, but for medical professionals. Little "o" babies are fighters. We need to quit encouraging termination of these pregnancies and encourage giving these children the chance to fight.

My family is so thankful for the incredible support we have received during this journey with our little "o" baby. I ask that as you have prayed for my beautiful baby girl, that you pray for the other o babies and their parents. And please continue to pray for the medical professions that take care of our babies.

Today, I wear black and white in honor of my fighter, McKinley Beth.


Andrea said...

Amen! :)

And thanks for stopping by my blog - you're right about my little guy being a fighter. He's got quite the kicks and punches, so I know he's going to give it all he's got once he is born!

momma k said...

God bless you all. my daughter turned 17 YEARS on march 3rd. she is also a survivor.she was born with one of the largest doctors had ever seen (however, it is not just size of the omphalocele only which impacts the outcome and everyones lives. she is very talented, beautiful, a true miracle and blessing. so glad we did not terminate the pregnancy as so many in the medical field tried to persuade us to do. thankfully we were dropped into the hands of a few wonderful docs and an amazing surgeon.hope she continues to be an inspiration to others. -debra