Well, on Friday we all met with the pediatric cardiologist. It went well and there were no new surprises. After the new echo and fetal EKG Dr. Rice came in and chatted with us. So, here is the scoop...
There is no change in the diagnosis of endocardial fibroelastosis. The EFE has caused aortic stenosis. Basically a thickening and closure of the aortic valve at the heart. There also is some abnormality of the mitral valve allowing for backflow but it is still functioning just not as efficiently as they would like. SOOOOOO, Dr. Rice is sending information to San Francisco (the University there) and requesting review for the in utero procedure. If they say no then the baby will receive a series of 3 operations beginning at birth to stabilize him until he can get a heart transplant. The surgeries are described really well at this web site: http://heart.health.ivillage.com/pediatricheartsurgery/norwoodprocedure2.cfm
It sounds like he is going to need the surgeries regardless but I need to double check that.
Well, thats it for now. We have to hurry up and wait again. Keep checking in as I plan on posting some new pictures when we get them...
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.
1 comment:
Denise,
I will keep praying for the little guy. I hope all turns out well and I will check back often for updates on him and everyone else too.
The other Denise W.
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