Son born with aortic stenosis

Synica - posted on 04/21/2010 ( 11 moms have responded )

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My son Elijah was born with a heart murmur that was orginally thought to be harmless, as time passed his Dr started to get concerned so we were sent to a cardiologist. At his first appt with the cardiologist when he was 2 months old we were told that he had severe stenosis of the aortic valve and that something would have to be done quickly. The following day he had his first Valvioplasty. He had a second at 4 months old and at that time we were told that he was not resonding to this type of treatment as well as they had hoped. So we then began waiting for the day when he would need open heart surgery. That day came when he was 11 months old. He had a ross procedure, which is when they put the childs pulminary valve in the place of the aortic valve and replace the pulminary valve with a donor valve. The week following surgery was the hardest time of my life but we made it through and my son is now 2 and 1/2 yrs old and is absolutely amazing. I tell our story because if what we have been through or learned along the way could be of any help or comfort I would be happy to share any info we have or answer any questions I could for mothers facing the same problems we had. Good luck and God bless you all!

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Gina-marie - posted on 07/11/2010

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I am so glad to hear he is doing well and came through the surgery well! Children are so strong! My son had 3 open heart surgeries by 6 months of age...I know how hard it can be. He is 11 now and doing really well.
I wish forums like this one would have been more common place back then...and I think you are awesome for caring enough to want to help others going through such a difficult time..

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Michaela - posted on 10/09/2016

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I would love to hear from you i am having such a bad time at the moment regarding my precious 3 year old boy .

Cece - posted on 11/04/2013

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hi I am a 34 yr old female and I was born with aortic valve stenosis. I have been mild since the day I was born and have had three amazing children along the way.
no issues at all not even during labor and my children have all been screened and are all in good health no heart problems whatsoever. I have been told that the time will come when I will have to have the open heart surgery to replace the valve and that only God knows when this will be. I have had very little issues with my valve I sometimes get a little light headed if I laugh too hard! no chest pain or tiredness or weakness and I thank God for all that! When I was younger I was told no sports scary movies anything that would get my heart pump fast and not to have kids. but yet here I am with three little ones! and I play sports and do what everyone else does. my cardo doc gave me the ok to do it all and has been very impressed with the mild state that I have stated in.
I know that one day will come when I will need to get this little thing replaced but for now I will live my life and watch out for any new symptoms and let my doc know if anything chances!

Megan Elizabeth - posted on 04/07/2013

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Hi, I see this post is old, but my son is 3 months old and is also getting ready to undergo the Ross Heart procedure in less than 2 weeks. Im so scared and nervous and I would love to have someone to talk to that has been through it before so I know what to expect. Anyone who is going through a similar thing would you please email me? Thank you so much.
Email:meganetaylor11@yahoo.com

Caroline - posted on 03/07/2013

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Hi, I'm not sure how old this post is, my son has just been diagnosed with a mild subaortic stenosis... In worried sick! He is to be monitored again in 6 months and I'm a bit over whelmed with info, will he able to lead a normal life? What signs do I need to look out for that means its getting worse? I am a single parent too, not sure what to do with all this??

Karen - posted on 03/18/2012

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Hi



Not sure where you guys are located we are in England.



Our son has had 2 balloons, (the first we suspect was experimental as we can find no details on a 2 balloon method)



The second balloon reduced the pressure across the valve but caused a regurgitation (leak)



We went to the hospital last week and his pressures are back up and they say he will need a Ross.



The original (senior) consultant stated he would need a ross just before he started school and he has just turned 4 and will start school in September; so his estimate was correct.



It is hard to find any information regarding the procedure, so I am glad we have found someone who is willing to share her experiences.



Can you give me a rundown from when your son went into hospital to when he came out of surgery and from surgery to the time he was discharged to recovering at home...



I know I am asking a lot but, I don't think hospitals are good at communicating this kind of thing as they don't like to be quoted or misquoted.



The hospital is great and a centre of expertise (Birmingham Children's Hospital UK) for heart procedures, so he is in the safest hands.



Any info gladly appreciated.



Karen (UK)

Synica - posted on 07/10/2010

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Elijah never showed any signs that I was told to look for, the only way that we knew when he needed surgery was by monthly check-ups with the cardiologists. The Ross Procedure is not a permanant fix. This is because the donor valve will not grow and will eventually develope issues. We were told that every case is different and they didnt know when he would need surgery but the dr.'s best guess is that he would need another surgery at about 5-6ys old, 10-12 yrs, sometime in his teen yrs, and then again when he is full grown. But this will vary based on when they have to start doing surgery, how well the valve holds out, and how he grows. Plus they are learning more and developing new procedures for the heart that are very promising. SO dont let it get you down that this is not a permanant fix. Be grateful that they can fix it and pray for new medical advances that may prove to be a pemanant fix. Another encouraging thing that I can tell you is that a few months after my son had surgery, my husband was talking to a guy at the gym and found out that the man (who was in his late 30's) had the same condition. He said that it had proved to be "annoying" growing up with this problem but that he also felt it made him appreciate things in life more. It was a VERY encouraging thing to me to hear of someone who grew up with the same problem, when they had less technology and discribed the whole thing as annoying!

Katie - posted on 07/08/2010

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My son is in a very similar situation. Aortic stenosis - discovered with a murmer at birth. Balloon procedure at 2 months. Now we await the Ross procedure. A question for you - did you ever see any of the signs they tell you to look out for? How did you know that he needed the surgery? I am happy to hear about another child doing the ross procedure. What do they tell you to expect for the rest of his life? Like when will he need any other surgerys in the future - or does the Ross procedure supposed to completely cure the issue?

Barbara - posted on 05/14/2010

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Thank you both. I felt like I was the only person with a son that has this problem. My son is 12 weeks today. He was born with Stenosis, bicuspid aortic valve, and coarctation of the aorta. He had a balloon procedure when he was 7 days, then open heart when he was 18 days. We went to the cardo dr for a follow up & he said he is more then likely going to need more surgery for his stenosis. I believe he described what you both are talking about with the ross procedure. LJ is eating great & growing so they want to hold out as long as they can I guess. He said the larger the heart, the easier it is for surgery. He has been thru so much already (he now has acid relux)

Synica - posted on 04/24/2010

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Shelagh, I think that it was helpful for us to feel educated about what was happening and what would happen post surgery. Never be afraid to ask questions or to question what dr.'s or nurses are doing. One of that hardest parts for me was that I was not prepared for the first few days of recovery. Try to prepare yourself for all the tubes and machines. They will have two drain tubes that come from the chest to keep fluid from building up and my son was on a resperator for the first 3 days. Also due to the trauma that the body goes through he started to retain fluid and his whole body and face swelled up. These are not thing that I tell you to scare you or upset but to prepare you. The better prepared you are the better you will be able to deal with these things. On the up side, once they were able to take him off the resperator he recovered so quickly. On day four he was smiling and trying to play simple games with us. Also please take time to take care of youself. If you can let someone else sit with them for even a short time and take break you will be able to deal with any of the tough stuff that may come along a lot better and when your baby is able to start interacting again you will be better rested. Although small these kids are tough and heal so quickly, they really are amazing! I also found it very helpful to have someone there with me for support or so that if I had to leave for any reason I was not leaving him alone. Hope everything goes well and we will keep you in our thoughts and prayers.

Shelagh - posted on 04/23/2010

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Thank you for sharing your story. My son was born with aortic stenosis too and yesterday on the day he turned 11 months I found out that he needs to have the ross procedure done too. Any advice you could give me would be really helpful. It is encouraging to hear from someone who has gone through this as a parent. Shelagh

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