Children inheriting congenital heart problems

[Abbanabba]

Insurance

Insurance

I don't think we have quite the same limitations on insurance in Australia as there seems to be in America (..although they're certainly seeming to lean in the same direction ..). My parents were able to buy a life insurance policy for me, despite my condition and surgeries..... however, this was quite a number of years ago, so things could well have changed since then!!

I've been tossing up whether or not to get medical insurance. Because I'm not working I can't see how I can afford AU$1300+ p/y, and considering Medicare will cover all my costs it seems I could definitely use the extra money for other things (..like food & rent!..). The only bonuses would be having a private room and my choice of surgeon when surgery is finally due, but being OHS, I don't imagine there's TOO many surgeons to choose from anyway. Otherwise, it seems like an awful lot of money to spend for very little benefit - especially since you're not able to make a claim in the first 12 months, so there's a $1300 "cover charge" right off the bat!

Yolanda -
I think it was someone here that wrote the following, but I thought it was really appropriate for you (..and I'm quoting from memory here....)
Kids will find their own limits and won't push themselves beyond them.
I thought this was so spot-on! We so often forget how resiliant kids can be. I hope the chat with your doctor on Monday will help your decision.

Cheers
Anna : )

 

[ccrawford]

I find this thread to be a very interesting one, and have comments that deal with two separate issues. The first issue is should the child be tested - If it can be done, I say by all means. You are much better off knowing than not knowing for a whole host of reasons. The second issue is making sure that the child (at the appropriate age - whenever that might be, understands the significance of the diagnosis) I was diagnosed with a heart murmer at least 25 years ago. Nobody took the time to explain what that might mean to me in the future. I found out, but came close to missing the whole point and the rest of my life. If I had known, would I have changed my lifestyle earlier and reduced the risk ?- that's a good question, but at least it would have been my option. The diagnostic tools today are pretty awesome - use em and advise your children at the appropriate age. That's my two cents. Chris

 

[atydev]

yeap

yeap

I totally agree with Chris. I just found out about my condition 6 years ago. I had no clue what a murmur meant or what role it could play in my life later. I felt it was no big deal. I don't think it would have changed the way I lived my life. Since I told my son about his condition he is still bouncing off the walls.

 

[surfsparky]

Hi Mary,
I think that we have now enabled the private messaging and email to operate - I hope! (I didn't even realise that we had disabled this function!) I'm happy to write about how Chris feels about the Ross procedure he had, either through this main thread, or via private messaging etc. The short version of his story is that he had the Ross Procedure 14 months ago and it was completely successful. Unfortunately though since then, his donor valve is not being accepted by the rest of Chris' immune system. That is, his immune system has begun to "scar it over" (for want of a better term), so he may have to have the donor (pulmonary) valve replaced in the near future. (But we're praying for a miracle!)
If you would like to know any more, let me know,
love Yolanda

 

[McCln]

Surfsparksy

Surfsparksy

When I was born, 1965, there was no test for kids for any kind of heart problems before birth evern. I can see that happening somewhat today. I was diagnosed three months after birth, after i was supposed to have been twins. There was a double heartbeat before I was born. There was no tests for what is common nowadays. But there should be a standard today. for family history of heart problems should be caught early. I even have a an aunt who was diagnosed when she was little, back in the 40's. She was sleeping alot, my great- grandmother told her mother, my grandmother, to take her to the doctor. She was diagnosed with heart murmur.

So I would recommend another opinion. It is important to get things checked out to be on the safeside. There have been children in the past tht suffered because there was no tests at the time. Your doctor needs to get with the program. Good luck on another doctor.

Caroline
09-13-01
Aortic valve replacement
St. Jude's valve

 

[Harpoon]

Harpoon - your brother may have been heart healthy and been a champion pole vaulter, but I'm sure that the girls would have thought your skate-boarding tricks were much more impressive!

My wife kinda hates it when I pull my board out and ride around some.... She's just like my dad, too afraid that I'll fall off and kill myself.


Worst injury I've ever suffered from skateboarding was a broken radius in my left arm (the small bone on top) and it was a minor break. I was in a soft cast for about 7 weeks. I was riding someone else's skateboard travelling on a VERY rough section of broken sidewalk when the front wheels hit a large crack and my body flew forward. My arms caught me, kept my face off the pavement. I didn't even know I had broken anything until the x-rays showed it.

Never hurt, just felt "funny"...



On the murmor: Children often develope "innocent murmors" when they run a fever, which my son had at the time when it was mentioned. The same thing can happen in adults when they have something serious like the flu. A "murmor" is loosely defined as any sound that is out of the ordinary from normal heart rhythm.

With this definition, the ticking of my St. Jude's valve is a murmor and if a doctor didn't know what that was, he could be (hopefully NOT) stupid enough to call it that.

Once upon a time I saw a 70+ year old oncologist (it was set up by my insurance) for a physical during a break from college. He asked if I knew I had a heart murmor after he listened to my chest...


"Huh? No? Oh yeah, THAT, it's the shunt that allows blood to flow from one chamber to the other since my heart is screwed up, I have transposition of the great vessels...."


His response: "Huh? I don't know what that is..."

He wrote down in the report that the patient (me) described having a heart condition that had been treated successfully.....


Well that's good to know....

 

[Gemma]

Yolanda,
I've been very interested in all the answers you've been getting here, because Jim's surgeon also advised that it would be worth getting any children we may have tested. He didn't say at what age to do this though. So thanks everybody for your answers and opinions.
Mary also brought up an interesting point about strep tests. Jim had his tonsils taken out about 2 1/2 years ago (a year or so before his bicuspid valve was diagnosed) because he used to get tonsilitis pretty much every month. What we've been wondering about lately is whether they should've noticed a heart murmur at the time. He set off the machines countless times with his low blood pressure and stayed in an extra night because of it. He's also even wondering whether it may have been these infections that caused the bicuspid valve, rather than it being congenital (in which case it would be pointless thinking about the hereditary nature of his valve problem!). Can't help but wonder why, less than 18 months before his heart was showing serious signs of aortic regurgitation, nobody noticed anything was up. Sorry to hijack your post for this rant, maybe it's related in some loose way!! Oh right, it is - the point being if you know about any valve problems before "routine" operations such as tonsilectomies, you can take better precautions and maybe have the doctors pay more attention to your well-being!!
Gemma.

 

[terryj]

When we found out my husband had a bad aortic valve we first thought it was because of all the strep throats he had when he was younger. But, the tests showed it was a bicuspid valve and the doctor explained he was born with this and it was not caused by any infections. We have also been told that our children and grandchildren should be checked for this. My husband had a cousin and a niece that had to have their aortic valves replaced. My husband was 51 before he had his mechanical valve put in. He had no symptoms except for the heart murmur found in a routine check-up.

 

[Harpoon]

A bicuspid valve can't be caused by an infection.

It's a defect in how the valve is formed in utero (did I spell that right?)

In a normal valve, there are three leaflets, shaped kind of like triangles that close together seamlessly to block the flow of blood through the valve then open again as the heart pumps. In a bicuspid valve, there are only two leaflets instead of three. This kind of works, but not as well and you'll get things like valve regurgitation and low BP's and other problems.... The valve GREW that way, it can't be damaged in some fashion to go from three to two leaflets.


Not all congenital defects are inherited either. Many are just random abnormalities that just happen for no apparent reason, mutations in the species... =Þ


I think it's better to test and know one way or the other than not to test and find out later on (possibly when it would be much harder to treat) that there's a problem.

I intend to get genetic testing done before my wife and I are ready to have a child of our own (my son is "adopted" but naturally hers) because a lot of the cardiologists that I've seen over the past few years have suggested there might be a genetic disorder that could be passed on.

I'd rather know about that risk going in than not.

 

[Gemma]

oops!

oops!

Sorry, my mistake - should've explained better. It was originally diagnosed as bicuspid, but when the surgeon got in there he discovered it was 2 leaflets fused together with a bit of a gap along the join, and the third leaflet was too small for the remaining gap - so really regurgitating and stenotic!
We've never raised the question of how they're sure it was like that when he was born. Just what they told us.

 

[Englander]

When our Shya was born Englander spoke with his cardiologist about getting her checked. He(cardiologist) was keen on the peadiatric cardiologist to check her but the GP was not. When i took Shya for a check we did find a murmur and were then refered to the Peadiatric cardiologist that was recomended to us by Englanders cardiologist. Shya was Echo-d (scanned) and we found a hole in her heart between the two atriums and there was flow between. Shya then was only 4 months (March). I lost my husband during his recovery in hospital and am very worried about Shya. I am glad I know of Shya's condition and will keep her monitored. She is a very happy and active baby and content. I will not stop her from being active but will at the same time be cautious.

I think it is best to know.
Bess

 

[Ross]

Bess pardon my asking, but what was Englanders real name? You've never mentioned it that I recall.

 

[The Bionic Duo]

Very interesting thread. Although it has been difficult to get straight answers from Bob's sister and brothers (5 altogether)--it would appear that there is a history of this in his family. His father evidently had some sort of valve defect that he never had taken care of and at least one of his brothers and one nephew have had murmurs and other heart defects.

Our oldest son has been checked out, but the youngest I don't believe has (another one hard to get straight answers out of). A peditrician heard a murmur in our four year old grandson and they had it checked out with a pediatric cardiologist, and they evidently did not find anything. My son says he will have him checked periodiocally from now on.

So put me on the list in favor of having children checked for cardiac problems.

Joan

 

[medtronic of borg]

Message

Message

I agree with him.

Med

 

[Englander]

Englanders Name

Englanders Name

Bess pardon my asking, but what was Englanders real name? You've never mentioned it that I recall.

ROSS
Englanders real name was Nish. I often wondered why he called himself englander and always made fun of him. We are of asian origin. He was born in England and I in Kenya and we live in London. When I have some time i will post exactly what happened to him in Hospital towards the end.

Am sorry to use this thread for this.

Bess

 

[Ross]

Thank You Bess, it just seems to help identify him rather then a screen name.

 

[gijanet]

Some info on hereditary CHD........

Some info on hereditary CHD........

Well, you know this subject is near and dear to my heart. Haven't had too much time to research, but here is a little bit of what I have found:

A link (can't remember where it is from now! ) :http://www.tmc.edu/thi/congenit.html

From the March of Dimes:
While most families have no more than one child with a heart defect, these malformations are more likely to occur in siblings or offspring of people who have heart defects than in unaffected families. This fact has long suggested that genetics plays a role in heart defects, at least in those families. In fact, scientists have recently discovered more than 100 mutations (changes) in more than a dozen genes that directly impair the heart. Many of these mutations cause cardiomyopathy (enlargement of the heart) or heart rhythm disturbances that can be fatal in childhood, adolescence or adulthood.

From HeartCenterOnline:Furthermore, the risk of having a child with congenital heart disease increases from eight in 1000 to 16 in 1000 if a parent or sibling has congenital heart disease.
Researchers are continuing to search for potential causes of CHD. Recent findings include the following:
? Infants born to diabetic mothers are five times more likely than others to have heart defects. The researchers noted that all pregnant women with diabetes should have a special ultrasound of the fetal heart performed.

From PubMed (couldn?t get it to pull up ? guess you have to pay????), but thought you guys might be interested: Ferencz C, Rubin JD, McCarter RJ, Brenner JI, Neill CA, Perry LW, Hepner SI, Downing JW.
Related Articles, Links


Maternal mitral valve prolapse and congenital heart disease in the offspring.
Am Heart J. 1985 Oct;110(4):899-900. No abstract available.
PMID: 4050668 [PubMed - indexed for MEDLINE]


From imaginis.com (I find this one hard to believe!)? Genetic conditions: Down?s syndrome and phenylketonuria in the mother (PKU, absence of the enzyme necessary to metabolize phenylalanine to tyrosine) are associated with congenital heart defects in children. Family incidence of congenital heart disease increases the risk by 50%.

Anyway, will continue to search as time permits................

 

[surfsparky]

Decison made!

Decison made!

Well, we had the chat with our doctor on Monday (after my son had calmed down from receiving his 5 year old vaccinations. Poor thing, he was so brave all day, and when he saw the needles, it was just too much for him!), and it was really helpful. We've decided to have Noah and Sienna tested, but when they are a little older. In the interim though, our doctor has suggested that he listens to their hearts each time we see him for presence of a murmur. I feel that this is the right choice for us, because for us, we'd rather know than not know. We came to that decision quite easily though because of all of your responses...so thanks! My thoughts are with all of you whose children have inherited congenital heart problems, because it must be so hard, but at the same time I'm encouraged by you and how you've all handled it so well. I'll be coming back for tips on how you've done it if either Noah and Sienna has inherited their dad's "lucky" valve. (this is what Noah calls Chris' valve...I think it was inspired from Nemo's "lucky fin"!)
Take care,
Yolanda (Chris' wife)

 

[strawberry]

HI!
My issue with this is I have Mitral Valve Prolapse and I read that there is a "typical body shape" for MVP which is basically a thin female, often having thoracic malformations and loose joints. I have a mild pectus excavatum (dented in sternum), am very flexible and have always been slender. My daughter who is seven also has the pectus and was born with dislocated hips caused by super flexible joints which didn't keep her legs in place. She is a twig: tall for her age and very skinny despite a great appetite. I would bet money that someday she'll be told she has MVP and I have been wondering whether to get her tested. I would just have her listened to closely but my murmure wasn't heard until the cardiologist saw the echo and listened very carefully in about four different places then he finally heard the clicking.