CHD and Children with CHD

[sandy]

HI , I am new to this post I have been following it on and off but never really posted anything. I was born with a Coarctation Of The Aorta that was only discovered at age 23. At this point I had Coarctation Repair and went on with my life. Two years later with the okay from my DR my husband and I wanted to start a family. I was blessed with Twin girls who appared to be Heart healthy at birth. One week after bringing them home one of my girls turned blue and we took her to the hospital to find out that she also had a COA. SHe had her Coarctation repair at 13 mounths old and is now almost 16 and doing well. Both my Daughter and I also have a Bicuspid Aortic Valve with mild reguritation that the Cardi keeps and eye on. I have an Aneurysm on my Aorta and have a MRI every 6 mo to keep an eye on it's measurements. Last summer my Brother , age 43 went into CHF and ended up in the Hospital for 4 weeks as the end result was that he had a Biscuspid Aortic Valve and needed it replaced. I brought my Heart Healthy twin to the Cardi for a Cardiac check, it end's up that she has Mitro Valve prolaspe. My sisters son was born with VHS that closed up on it's own, he also has Mitro Valve. His sister had repair for rapid heart beat, she also has Mitro Valve. My oldest sister has Mitro Valve, another brother has mild Prolong QT. I was wondering if anyone else has a strong History of CHD in their Family.

 

[Karlynn]

Sandy,
Welcome to our site. Wow, that is a strong family history. Mine isn't nearly as strong, but there is a history of Mitral Valve prolapse. So far, it hasn't showed up in either of my children. I was diagnosed with a murmur as a child. Testing never proved what it was. The murmur went away and then surfaced again 2 months after I was married and MVP was dx'd at the time. My pregnancy w/ my second child wrecked the valve. It's awesome that you had twins with no issues for you.

 

[strawberry]

Hi Sandy, I'm new here too. I had a PDA repaired when I was 2 and now I've been diagnosed with MVP and mild aortic regurgitation. I worry about my seven year old girs and am thinking about getting her checked. I have a cousin who had an ASD, a bunch of second cousins with complex CHDs, and a lot of people with MVP in the family. It's weird to me when people don't know anyone with a CHD with all that! Oh, and I had an Aunt who only lived a few months back in the forties who had a complex CHD.

 

[Arlyss]

Hi Sandy,

So sorry to read about what you and your family are experiencing. The cause of this is not well understood, and there is a lot of variation in how it affects individuals and families.

You might find it interesting to read the following link. In the aortic disease section, under coarctation it mentions that it can occur along with bicuspid aortic valves. In the bicuspid disease section there is further information regarding that condition.
Hope you find this helpful
http:www.cedars-sinai.edu/aorta

Take care,
Arlyss

 

[Harpoon]

Hey sandy, guess what, fellow CHDer here... =)


Was born in 1973 with transposition which was fixed within a year and didn't cause me any grief until 2001 or so...


You may want to ask around about genetic testing for you and your family, especially if there are "secondary" birth defects in your or your children relating to the developement of your uppoer torso and skull. (misaligned bones, or other "abnormilities."


Turns out there are a series of genetic "disorders" that can be associated wiht congenital heart defects and they may some times be passed on from generation to generation.

A few simple blood tests should be enough to confirm and isolate these things, if they're there. =)

 

[Heather Fisher]

Hi Sandy,
I was also born with a coarctation of the aorta and a bicuspid valve. My father had a coarttation and eventually developed an aneurysm. His valve was normal. I know his father died suddenly at a fairly young age in circumstances that could have been an aneurysm. I only gave birth to one child and was told not to do it again. So far he has checked out as being totally healthy.

Heather