Congenital Heart Defects Awareness Week & Day

[Lisa in Katy]

I wasn't aware of this, but discovered it while reading an article in our local paper. February 14 is Congenital Heart Defects Awareness Day and February 7-14 is Congenital Heart Defects Awareness Week. The following is a quote from one of the links in the article.

According to the Oregon chapter of the Children's Heart Foundation, nearly twice as many children die from congenital heart defects each year in the United States than from all forms of cancer, yet pediatric cancer research receives nearly five times the funding.

I'm not a congenital person, but for all of you out there who are - Cheers to You and Your Week! Go out and celebrate your good health!

 

[Lynlw]

Thanks, here is some good info on it http://tchin.org/aware/#In
BTW the Founder of CHD Awarenss is our very own Jeanne, Matt's mom, Lyn

 

[NascarfanMary]

Thanks

Thanks

Loved the info. I didn't know till I was 20 yrs that I had congenital defects. I was shocked. That has been 24 yrs years ago (just told my age). They found the Heart defect first and after many test found that I was also situs inversus(all other organs not in normal places). When I asked why this was just being discovered, Dr. was dumbfounded, Said chest xrays were turned around to make heart look like it was on the proper side.

They say that I am a mirror twin. My brother has all his organs in the right place!! He loves to tease me. I do often wonder why the holes in my heart weren't found untill 2002. I just think that technology today, has progessed so much since then.

I was able to have a child. He has no known congenital defects that we know. I asked my cardiologist why they were sending me to Cleveland Clinic when I had to have OH. It was because of the defects that I was born with. I had all 3 surgeries at Children's. Here I was an adult and on the pediatric cardiac unit. (they spoiled me as well as the children)

I support any child with this. I am glad that they are able to find this now when they are born and can get things taken care of sooner than I did. I am still alive. There are alot of us here and I for one appreicate the info that is past my way. Have a blessed and happy week. Happy Valentine's Day

 

[Lynlw]

Loved the info. I didn't know till I was 20 yrs that I had congenital defects. I was shocked. That has been 24 yrs years ago (just told my age). They found the Heart defect first and after many test found that I was also situs inversus(all other organs not in normal places). When I asked why this was just being discovered, Dr. was dumbfounded, Said chest xrays were turned around to make heart look like it was on the proper side.

They say that I am a mirror twin. My brother has all his organs in the right place!! He loves to tease me. I do often wonder why the holes in my heart weren't found untill 2002. I just think that technology today, has progessed so much since then.

I was able to have a child. He has no known congenital defects that we know. I asked my cardiologist why they were sending me to Cleveland Clinic when I had to have OH. It was because of the defects that I was born with. I had all 3 surgeries at Children's. Here I was an adult and on the pediatric cardiac unit. (they spoiled me as well as the children)

I support any child with this. I am glad that they are able to find this now when they are born and can get things taken care of sooner than I did. I am still alive. There are alot of us here and I for one appreicate the info that is past my way. Have a blessed and happy week. Happy Valentine's Day

Actually sadly, many are still missed. Many of the athletes or kids that die at amusement parks are undxd CHDs, and death was the first "sympton". I know many children w/ serious major CHDs that were missed on prenatal Ultrasounds and since there is NO routine screening of newborns in the US , (even tho CHD are the Most common Birthdefect AND leading cause of birth defect related deaths) many babies CHD aren't dected until after they are sent home "healthy" & they either crash or are in a crises before a CHD is detected, and by then it is much harder to get either well enough to be able to have surgery or a rougher time post op. Actually I had a few ultrasound w/ Justin and it wasn't until the 2nd day when he turned completely blue during feeding that his CHD was detected (at a huge national well know Philly hospital). We were "lucky" becuse we were gong to be discharged in a few hours, but Thank God we were still in the hospital so they could help him right away.
Sorry to go off on this tangent, CHD Awareness, ect is both my passion and frustration, Lyn

 

[NascarfanMary]

Lyn,
Thank God Justin's was found out early, while you were still at the hospital. I wish that my mitral valve could have been replaced sooner. But The Dr. I went to prior to this( no longer my Dr.), just ignored my condition and I went for a second opinion and she saved my life by wasting no time in getting me to Cleveland.

I think children should be checked anyway at birth even if they have to be in the hospital an extra day, because they may seem very healthy, but this could go on undetected for years, like I was. There are no evidence of this on any side of my parents. I am the 1st.

Now I have the tricuspid valve that is leaking and pulmonary hypertension. Just found out yesterday!!! Why couldn't all of this have been found when I was younger. I am an emotional wreck. I am waiting on cardio to call.

I saw so many newborns, toddlers, youth and Adults when I was in Cleveland and they were a good comfort to me. I felt their pain because I had went thru what they went thru. At times it was so sad to see their families hurting. But at least the have a better chance now days to grow up.

I have been lucky that I have lived this long (44 yrs), with not knowing for 20 yrs that my heart is on the wrong side and all my organs are reversed. Thankfully, this can be found at birth. I'm sending Justin lots of hugs and alot of support. Tell him he has a buddy here. I know how it feels. Best wishes.