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aerfirmie

Member
Joined
Mar 9, 2012
Messages
13
Location
NC
Hi. I'm aerfirmie. My 7 year old daughter was born with Truncus and a leaky aortic valve. They did the repair for the Truncus when she was 3 weeks old. She's been doing well these past 7 years. Even though her aortic valve has severe leakage, they chose not to operate because her heart has stayed a normal size.

A few weeks ago she complained of trouble breathing. The doctors could find nothing wrong and it only happened one time. But as a follow-up, they gave her a cath last Thursday. They were surprised to find that she had an aneurysm. So they are going to have it removed on the 20th - sooner if someone else's surgery is cancelled. They will also replace the aortic valve.

Right now we are at home. I am having trouble getting rid of these morbid thoughts. Do people just walk around with aneurysms? How will I make it during the wait for the surgery and sitting there through the surgery? Isn't she young to need an aortic valve replacement? What does the future hold for us?
 
I had an aortic valve and root replacement (had leaky valve and ascending aneurysm) at age 63, and I don't have experiences with pediatric equivalents. But others here do have that knowledge. It's kind of slow on Sundays but give them a few days and I bet they will be around to share their insights. I know that complex heart surgeries have been performed successfully on children. Just wanted to check in, welcome you to the forum, and offer my best thoughts and prayers. I know it's tough to wait and to have this challenge with a precious child. I sure the folks here will be compassionate and helpful. Sending you all best wishes....
 
Hi, Sorry to hear your daughter needs another surgery sooner than you hoped. My son, who will be 24 soon and had his 1st surgery at 10 days old, is also the 'heart patient" so I know alittle how you must be feeling. Yes people can walk around with annuerisms or wait for surgery all the time. Actually we've been watching one on Justin for a few years now. From our experience, IF it was at a point or large enough they didnt think she could wait a couple weeks, they would do ER surgery and bump someone else. So I wouldnt spend too much time worrying about that. Also even tho it is alays better to be able to wait to have valve replacements, there really isnt "too young". But You could always get a 2nd opinion, not only on what kind of surgery, annuerism and valve or just the annuerism if it would be possible to keep the valve longer since she is a young female or maybe repair instead of replacement etc.
so you dont have to 2nd guess yourself wonder If you made the 'right" decisions. I always feel better hearing another group of doctros give the same opinions, since it is in MY opinion tougher making choices that your child has to live with the rest of their hopefully long happy life, than making decisions about me. Before I forget, most of the member here needing their valve replacemnt as an adult and it was their first OHS, without other CHDs that make everything more complex, it is a really great place for support, but if you haven't found one I really reccomend also joining one of the groups for CHDs that most of the members are parents, who kids had one or more surgeries as small children/babbies and everything that can go along with growing up with Complex CHDs. There are members with brand new babies or even "kids' in their 30s now and everything inbetween. Quite a few member have school age kids.
One of the best lists i know of are the ones The congenital heart information Network (TCHIN) http://tchin.org/support/index.htm there are a couple groups, but the main one everyone posts at is pdheart, even if they join one of the others there. There are members with brand new babies or even "kids' in their 30s now and everything inbetween. Quite a few member have school age kids.
http://tchin.org/support/index.htm

Do you go to Duke? If not I'd probably contact them about 2nd opinions? If you go to Duke, you could always get an opinion from one of the other CHD centers, for the most part IF you contact them they can have you send records, cds of the most recents tests etc and can give you their opinion without having to travel there.
As or how to make it thru the awful wait while she is in surgery, really I dont have much advice, its awful, but everyone is different. Some people like to have family and friends there with them, others like me, rather be alone, Just do what you think worked best for you last time and dont worry about hurting other feelings if you like to be alone or if you want support there ask. i cant really think during that time socant read a book or things like that, but I take things like mindless word search books laptop etc. Somehow you will do it because you have to as much as it stinks
 
So sorry to hear about your daughters need for surgery. I have a chd myself, so can relate to what it's like growing up being in and out of the hospital. Do you know what kind of valve they will give her, tissue or mechanical? Is she already on Coumadin, if not have you been looking into taking care of her management?

Where are you in NC? I agree with Lyn about checking out Duke (I had my first surgery there). I'm in Charlotte.
 
Thanks all. I live near Burlington. We are having the surgery at Chapel Hill because that is where she had her first surgery and we liked the care.
 
Sorry to hear about your daughter. I'd be very scared too; but the good news is the fixes are usually durable. I've been walking around with an aneurysm since my teens and i'm nearing 30 now, to answer your question. I haven't had the surgery yet.

The best advice I could give you is to try your hardest not to let the fear consume you and get a very experienced surgeon. A surgeon that deals with pediatric valves such as your daughter's would be ideal.
 
Sorry to hear about your daughter, I do feel like she'll be in good hands though with technology the way it is. I'm 25, and my surgeon that did my AVR specialized in valve replacement in babies, to young children, he had done hundreds of heart surgeries on children over the last decade, I think that's why I went with him, not only was he a great surgeon with a ton of experience, but if he had done surgery on so many tiny little hearts that is imagine to be more complex, than a regular sized heart would be a walk in the park. I can't imagine what you're going through as a parent, and to tell you not to worry would be foolish. But if you're comfortable with the care she received as a baby, than have faith that things will end up well for her, and she can put this behind her and continue on growing up and having a wonderful childhood/life. Best wishes to her and to your family.
 
My thoughts and prayers go out to you and your family. I hope that everything goes well! Good luck and God Bless.

Tom
 
aerfirmie said:
Hi. I'm aerfirmie. My 7 year old daughter was born with Truncus and a leaky aortic valve. They did the repair for the Truncus when she was 3 weeks old. She's been doing well these past 7 years. Even though her aortic valve has severe leakage, they chose not to operate because her heart has stayed a normal size.

A few weeks ago she complained of trouble breathing. The doctors could find nothing wrong and it only happened one time. But as a follow-up, they gave her a cath last Thursday. They were surprised to find that she had an aneurysm. So they are going to have it removed on the 20th - sooner if someone else's surgery is cancelled. They will also replace the aortic valve.

Right now we are at home. I am having trouble getting rid of these morbid thoughts. Do people just walk around with aneurysms? How will I make it during the wait for the surgery and sitting there through the surgery? Isn't she young to need an aortic valve replacement? What does the future hold for us?
Click to expand...

Hey aerfirmie,
I'm an 18 year old CHD'er with truncus type 2, large VSD and other things (see signature) I had my "repair" done at 13 weeks, conduit, & pumonary valve replacement & aortic repair at 8 years old (amazing to get to 8 with truncus and only 1 op! your daughters done amazing too!! as normally those with truncus need op number 2 at 5-6 years!) i had stents attemped at 12 years but failed and ended needing my aortic valve replaced a 13, then, needed emerancy OHS last year for another aortic valve replacement (17 at the time) i am now waiting for my 6th op, which will be a pericutaneous pulmonary valve replacement, with stents and stretch of the conduit pipe,
I hope everything goes well for your daughter on the 20th,
If i can do anything at all to help.answer your questions honestly just ask :)
Thinking of you both,
Love Sarah xxx
 
stents

stents

A stent is a small mesh tube that's used to treat narrow or weak arteries. Arteries are blood vessels that carry blood away from your heart to other parts of your body.

A stent is placed in an artery as part of a procedure called angioplasty (AN-jee-oh-plas-tee). Angioplasty restores blood flow through narrow or blocked arteries. A stent helps support the inner wall of the artery in the months or years after angioplasty.

Doctors also may place stents in weak arteries to improve blood flow and help prevent the arteries from bursting.

Stents usually are made of metal mesh, but sometimes they're made of fabric. Fabric stents, also called stent grafts, are used in larger arteries.

Some stents are coated with medicine that is slowly and continuously released into the artery. These stents are called drug-eluting stents. The medicine helps prevent the artery from becoming blocked again.

Hope this answers you questions. My dad has 4 of them
 
Hi,

I’m sorry you and your daughter are going through this. It can be tough on everyone, but likely tougher on you as the parent!

My step-son (12yo)just had two valves replaced at the end of November, as well as a graft for an aortic aneurism. We were unaware of the aneurism before the surgery, but I would trust your doctor in terms of the severity of the aneurism and the wait for surgery. All though there is no certainty in anything, surgeons aren’t generally willing to bet their patient’s life if it’s a questionable situation. If the situation required surgery immediately, that’s when it would have been done.

As for surgery, it’s always a scary time, but rest assured that children generally recover quickly – she’ll be back on her feet before you know it.


I just wanted to add that Skyler was frequently breathing hard and short of breath after doing very little exercise (climbing 8 stairs) pre-surgery. He also complained occasionally of chest pain at regular and random instances (standing under the hot shower, exercise, walking to the bus stop). These were likely caused by too small a mitral valve, and the aneurism. I would recommend not worrying too much, but making sure that your daughter knows to slow down or stop whatever activity she’s doing if it is overly strenuous and accompanied by any major symptoms. Likely she will anyway.
 
Just when I was feeling sorry for myself for finding out yesterday that I'm in A-fib all the time the past couple of weeks, I read your post and the subsequent posts. I can only add that children seem to recover quickly. And valves and grafts are done so much now, the risk is low, I think. I remember when I was 12 yrs and my best friend had to have OHS. This was in the 60's and OHS was pretty new. She came through with flying colors, and when I visited her in the hospital she showed me around like she hadn't even been through surgery.
She became a Dr because of the great care she received then. I believe she had Dr Shumway!
It's good that your daughter doesn't have to wait too long for surgery. Sounds like they want to get in there and repair/replace asap. So, we will be thinking positive thoughts for your daughter and know that she will be fine. Yes, it's scary, but many of us,old and young, have been through 3 or more OHS. And we consider ourselves healthy when it's all over.
Take care.
 
I'm very sorry to hear of your daughters heart conditions. My youngest son was born with a leaking bicuspid aortic valve and a leaking mitral valve. His first surgery was at 6 weeks to try and open the aortic valve to allow more blood through and buy some time. This process was successful and he was able to maintain until he was 7 years old. His next procedure was to do the same thing and put a tuck in the mitral to decrease the leakage. The surgeon wanted to buy enough time so he could replace the valve once his heart was closer to adult size. The third surgery came when he was 10 years old and the Ross procedure was accomplished (replace the aortic valve with the existing pulmonary valve and then use a tissue valve to replace the pulmonary). That procedure worked and he just turned 25 with no problems.
I can tell you that regardless how young or old our children are, these surgery's are scary. And we were able to get through them by trusting in God to see the procedure through to a successful result. We also had family and friends by our side during the surgery to help reinforce our beliefs.
Your daughter has already come a long way since her first surgery and it sounds like she did just fine then. I can't think of a reason why the outcome of this surgery would be any different.
Today is the 9th day since my OHS to replace my severely stenotic aortic valve. And I can honestly say that by researching the procedure, the chances for success and full recovery, and reading the success stories on this site, I went into this surgery confident that I would get through it and fully recover.
You're in my prayers so please keep us posted if the surgery date changes or once it's been completed
 
Aerfirmie
Your daughter and family are in my prayers for today and during post-op. Please let us know how everything goes.
 
Hi everyone. The surgery is over. One of the doctors said it went a lot smoother than planned. The surgeon literally had a big grin on his face and pulled me into a hug!!! I am so thankful to God. We are in ICU now. Laura is not pleased with the breathing tube and wishes the nurse would let her have water. Earlier, she was vomiting a lot because they neglected to put an NG tube in her. So the ICU nurse put one in. She was also putting out urine faster than they could put fluid back into her system so they had to work on that for awhile. She was tachycardic for awhile too but is not now. Thanks for the prayers and support.
 
Oh...another thing I forgot to tell you about. The surgeon was concerned about doing bypass on the chest because of the aneurysm so he did it on her upper thigh maybe??? I don't remember the exact spot.
 
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