success rate of cath procedure to fix aortic valve stenosis is 3 month old?

Helena - posted on 12/05/2010 ( 7 moms have responded )

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My son just had a balloon valvuloplasty procedure to relieve his aortic valve stenosis. His gradient before the procedure was 55 and after procedure 23 with minimal leakage.

I am nervous about the future. Anyone have similar procedure with similar stats before and after?

Do all children born with this eventually need open heart surgery to replace valve?

any feedback greatly appreciated.

Thanks

7 Comments

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Susan - posted on 07/22/2013

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hi,
My son is now 19 years, had his procedure done at 14 days. Down to 25 after 51. His latest reading is 67. 70 is the due reading for a replacement. His has gone up from 54 over the last 5 years. There is also more leakage, but the dr is confident that another year + before. Here in South Africa they are only starting to look at the cath way, and only with eldery people, so in another year + we might also be lucky. In time I was able to worry less about his health. He pace himself, but cannot partake in any contact sport.

Kirsten - posted on 02/21/2012

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Hello all!



My little boy was only 2days old when he was diagnosed with a mild murmur and a month later it was diagnosed as moderate.



He was so very tired and barely had energy to feed and we were getting to the point of resorting to syringe feeding.



He had a balloon catheter performed at 4months at which he became a new baby. He grew up all in a hurry! No longer my baby, he became a little boy! And what a little champion he is!



We had a checkup in December and we've been so fortunate that his response to his procedure has been great. Our Cardiologist has prepared me that yes, there are only so many times the balloon procedure can be performed, and yes, at some point we will have to do the Ross Procedure, but in the mean time he needs to just have regular checkups. Otherwise, he is just perfect.



At 15months old, he is the happiest of children and such a social butterfly. He relishes everyday and enjoys the smallest of joys. And he teaches me something new everyday and makes me thankful.



Tell me, if there are ADHD or Asbergers indications, or other common to heart disease children conditions, at what age do these show? What am I looking for? (Some of these posts have scared me a little - no body mentioned any of these things to me before!)

Kelly - posted on 11/18/2011

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hi hn my little boy had it done wen he was 3 months old and the consultants have told me that he would have to have open heart surgery in the future could b wen he is in his 20s or even his 50s how is ur son hn i would like to hear frm u hn my son is 3 in dec how old was ur son wen he has it hn and how old is he now my son had his at alder ha childrens hospital in liverpool where did ur son have his hn xxxx

Kerrigan - posted on 12/31/2010

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Our son had the vavuloplasty at 8 weeks and then had a co-arc repair at 3 months.Hsi gradient was 83 before his plasty and then 31 afterwards. He is 3 years old and had another cath in Oct which failed and then had to have OHS on Nov 23 to repair his valve.His surgeon was able to only repair his valve but he will have to have it repaired when he is older.We are hoping that he will be much older.Please keep in touch it seems our LO's are similar.Broc also has abnormal mitral valve too and other health issues.

[deleted account]

Mine did have the pulminary valve not the aortic, but the cardiologist that saw him last year was the one that said they were profecting all procedures, that in just a few more short years they'd be able to do all of them via cath. I remember when he was born that his heart was only pushing about 15% of the blood through. We weren't given much hope. He also had a severly enlarged heart, so big in fact that it took up his entire abdominal cavity and was compressing his bowels. It was the most interesting thing to watch, especially after he got out of the hospital and I would be changing him in public restrooms! I had one lady almost faint LOL! I know that now his regurgiation is in the low 20's now, but I really don't keep too much tabs on all of it anymore. He has so many other issues that developed later on that they are our main concern. We discovered that he was hypotonic after he was a couple months old, or kind of floopy, and wasn't hitting his milestones. He was diagnosed with severe cerebral palsy at one year old that they said was because of his heart issues. His oxygen saturation was in the 70's and one time it hit 42 before the surgery. We were told he'd be a vegtable. We started working with him nonstop and eventually got him to walk on his own with braces on his ankles, and eventually talk. Shortly after that he was diagnosed with severe asthma and aspergers a form of autism. His cerebral palsy was downgraded to mild since we were able to get him mobile. Here just recently we found out that he has a 80% chance of inheriting a genetic disorder on my husband's side called aortic dissection. He had about a 50% chance of having it from genetics but we found out that children that are born with heart conditions have a 20-40% chance of developing it also, and so that ups his risk greatly. (My other children have a 50% chance too.) If he/they does/do indeeed have this disorder, he/they may not live past his/their 30th birthday(s). So all that has been keeping us on our toes not to mention my other two biological children also have autism and are slightly hypotonic. And all the kids have sensory processing disorder!
I'll know more when we go to the cardiologist in March, but I don't concern myself too much. I know every year you can expect to see a slight regurgitation but nothing major until the heart has to work extra hard as in puberty, so they won't worry about slight differences each year for regurgitation until then or until it gets pretty high. I would say that now that your son is doing so good and had his surgery, to not worry about any of it until you have to :)
What state do you live in?

Helena - posted on 12/06/2010

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yes it does - thanks so much for getting back to me. I heard they had replaced the pulmonary valve by cath by using the melody valve. I was told it would be decades before they'd be ready to replace aorta valve like that...



Can you remember what your son's gradient was before and then after the procedure? And what is his current stats? I know all children are different but it would be great to compare.



You have given me hope!



thanks

[deleted account]

My son had the same type of procedure done when he was five weeks old. He's now 7 years old, with still minimal leakage. Doctors said that eventually his valve will have to be replaced most likely when he hits his teen years when the heart has to work harder, but might not need it done until around 20 years of age. The good thing is nowadays they do not need to do open heart surgery anymore for these types of procedures, they can run a cath just like they did with the balloon procedure but instead of a balloon on the end, there would be a new valve which they would put in place. Not quite sure how it all works, but he says they've just profected the procedure this year, so by the time your child and mine will need replacement valves, there will be no major surgery involved. I hope that helps. :)

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