That is what we all wanted to know! So, here is the official definition of EFE...
Endocardial fibroelastosis (EFE) is a rare heart disorder that affects infants and children. It is characterized by a thickening within the muscular lining of the heart chambers due to an increase in the amount of supporting connective tissue (inelastic collagen) and elastic fibers. The normal heart has four chambers. Two chambers, known as atria, are separated from each other by a partition called the atrial septum. The other two chambers, known as ventricles, are also separated by a septum. Valves connect the atria (left and right) to their respective ventricles.The symptoms of endocardial fibroelastosis are related to the overgrowth of fibrous tissues causing abnormal enlargement of the heart (cardiac hypertrophy), especially the left ventricle. Impaired heart and lung function eventually lead to congestive heart failure. Endocardial fibroelastosis may occur for no apparent reason (sporadic) or may be inherited as an X-linked (EFE2) or autosomal recessive (EFE1) genetic trait. (INFORMATION TAKEN FROM THE FOLLOWING WEBSITE: http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Endocardial%20Fibroelastosis)
A lot of medical jargon but so far this is the best I have found.
Friday we get to venture to Portland to meet with the pediatric cardiologist with OHSU. She will give the final thumbs up or thumbs down on the in utero procedure that we were informed of last friday. Lets all hope for the thumbs up!
Nicole and Bryan are doing very well handling all this information. Better than the grandmas most days I think! Bryan is of course concerned with the everyday issues of running a family. Bill paying, moving, job changes. It is a lot for him. Nicole is concentrating on the baby and still having a life. I am amazed at how well they are doing.
So, that is it for now. I will post as events unfold. Be sure to comment so we know who popped in!
Denise
Baby Christian
Christian was born with two very rare congenital heart defects; Hypoplastic Left Heart Syndrome (HLHS) and Endocardial Fibroelastosis (EFE) He will require three (two down, one to go!) open-heart surgeries to sustain life. He is a miracle and a blessing. We are so greatful to have him here with us. Thank you for stopping in.
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3 comments:
Denise,
I will be praying for you little guy(well grand guy :)) I will check back often to see how things are going.
Thanks for the update! I have a sticky note on my computer reminding me to pray for baby Christian and his family. I'll especially be praying for the trip to Portland on Friday!
I love you my sweet baby Christian. I love being able to feel your little kicks, even if they wake me up! Keep being strong for mommy and daddy! We love you more than life.
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