Congenital Heart Defect

[boklaw]

I'm new here, but I've already learned so much! Thank you. My daughter has a CHD, Double Outlet Right Ventricle with Pulmonary Stenosis. She has had 2 OH surgeries and we are waiting to find out when her next one will be. She's going to need a new pulmonary valve sometime in the next 12 to 18 mos. She's only 2 1/2 now, and we're hoping to go as long as possible before the new valve so she won't have to have as many replacements over time. My question: is there anyone else who had a new valve as a young child? How many valves did you need during your childhood? I dread the teenage replacement due to modesty, body image, all the stuff you'd expect a teenage girl would be going through. We go to the cardiologist next week and I'm dreading the appointment as it could be the one where we're told that it's time for surgery. Thanks in advance for any help.

Bridget

 

[Lynlw]

Hi Bridget, My 22 year old son Has a different CHDs , he has Transposition of the Great Arteries,VSDs Pulmonary stenosis, but because of his pulmonary stenosis, he couldn't have a switch and had the Rastelli, which I'm thinking is what your daughter has? Justin had his BT shunt at 10 days and Rastelli at 18 months. His surgeon didn't give him a pulmonary valve in his conduit at the time in hopes he could go longer between his surgeries. He ended up having a conduit revision when he was 10 and when he was 17 his conduit was replaced and he got his first valve.
There are a few Mom that are members here, but IF you are interested, one of the very Good CHD group is http://tchin.org/join/index.htm there are quite a few members with kids from babies to their 20s.
Unfortunately IF your daughter had a Rastelli, there aren't very many people that have it, I've found a few online,but most are pretty young preschool or grade school, and only 2 people older than Justin. So it is hard to find out much about how they do ect.

 

[RI Mom]

Hello Bridget,

My 7 year old son also has a CHD (transitional AV canal and pulmonary stenosis). His initial surgery to repair the AV canal and attempt to open the PS was performed at 10 mos. His PV was very malformed and needed to be removed. The thought at the time was that he would do OK without one, however, that was not the case and he needed a replacement of the PV and MV at 4 years. The mitral valve (mechanical) did very well but the pulmonary (homograft) failed miserably and was stented within a year and then replaced at age 6 with a bioprosthetic porcine valve in a dacron conduit. It has been a year now with the new PV and it is doing quite well. I am hoping that some of his future replacements might be done through a catheter.

I don't know how teens do with OHS but I can tell you that my experience has been that the preschool years were the hardest for us as far as the emotional status of my son was concerned. He did much better emotionally at 6 than he had at 4. There are a lot of things that you can do that will help but as you know, much of it is out of our control.

Best Wishes,

 

[ShezaGirlie]

Hi Bridget -- I just want to welcome you and let you know you will be among other Mothers here who advocate for their children too.

 

[gijanet]

We go to the cardiologist next week and I'm dreading the appointment as it could be the one where we're told that it's time for surgery. Thanks in advance for any help.

Bridget

Hi, Bridget, and welcome to the group. I can so relate to what you are feeling. I remember all too well those years when I just dreaded Katie's PC appointments as they never seemed to bring good news. The only surprises were bad ones. :-( My daughter Katie is 9 years old and was "blessed" with some very complex heart defects, two of which were DORV and PS. Our biggest unwanted surprise (other than the original diagnosis) was finding out that Katie's atrioventricular valve had developed a severe leak. Katie has had five OHSs, including a valve repair attempt and thena replacement of her valve with a mechanical valve. She just celebrated her 5 year valversary July 12th, and so far, so good. (Knock on wood!) She had it implanted when she was 4 & 1/2 years old. Things are going well, thank God! Her surgeon was able to place a small adult size valve, so we hope not to outgrow it, although that is certainly a possibility. And the coumadin is not that big a deal, but Katie does stay one big bruise. Y'all should not have to deal with that as mechanical valves are not typically used in the pulmonary position. While Katie is not yet a teenager, she is about to enter fourth grade. She is not the least bit modest about her scar. She just accepts it as a part of her. She was the school spokesperson at her elementary last year for the AHA's Jump Rope for Heart and is going to be speaking to all of the Arlington PE teachers this year at their inservice on Aug. 18th. She is really excited about it, and I think this has really helped bolster her self-esteem. I hope this holds true when she does become a teenager.

A good friend of mine (besides Lyn) has a daughter who has had two pulmonary valves replaced. One when she was a toddler, and the other just two years ago. SHe managed to get 9 years out of her valve, which is pretty rare for a child, but, hopefully, y'all can get that same kind of mileage.

Please keep us posted about next week's appointment. Good luck and God bless. Janet

 

[DesMoines]

Hi, I'm not a mother, but I was born with pulmonary stenosis. I had my first operation when I was 1 to repair it, then I had it replaced at 12. I went through two homografts within three years and had a mechanical valve put in. Now, at 28, scar tissue has built up on the mechanical valve and I'm going to have a bovine valve put in, which hopefully will last a while and can be replaced without open-heart surgery... I've got my fingers crossed.

Anyway, as to your question about being a teenager dealing with heart surgery, I was able to participate in a lot of activities, everything I wanted to except contact sports. I was in the marching band, plays, golf, etc. I'm a guy, so obviously certain things a girl has to deal with I didn't. After I was back at school for a while, the kids forgot about my surgeries. Just let your daughter know that if she wants to lead a normal life, she can do it. Let the doctors handle her heart, let her be a kid.

Our lives might not be as easy as some people's, and not many people understand what we go through, but don't let that stop her from leading a normal life.

 

[sunnysideup]

Hi Bridget,

My daughter was born with CHD and she has mitral valve regurgitation. She went thru 2 O H surgeries forrepairs which failed and in the end had a the 3rd OHS to fit with a mechanical valve instead. It is actually a an aortic valve but put the other way (her surgeon did some "modifications" to fit a new born. Today she is 5 and she is still with her original valve. There is some narrowing of the anulous as she has grown so well after her replacement. Her doctors are keeping a close eye on her development and we just take things as they come along.

We self test as home and she had her "episodes" with warfarin when she was a toddler. These days she understands she needs to take them everyday and she says it's for her "heart problem".

I am also hoping the valve will last her longer but deep down inside there will be a time it needs to be replaced to cater for her heart that has grown. When that time comes I hope she is healthy and the conditions are good.

cheers
Dawn

 

[vtbecca]

Hi Bridget,

My son Gabe is 9 and has Truncus Arteriosus. He had his initial surgery at 2 weeks and the next at 17 months. In the first surgery a valved conduit was placed for his pulmonary artery, for the second it was replaced. It has now been almost 8 years (on Sept 4). The valve is working quite well. Not perfect, and is starting to fail faster, but the surgeon had hoped for 8-10 years and it looks like we'll get there.

My biggest advice is try not to worry (though it's hard!). The valve may go longer than planned, and worry won't change the outcome of anything. These kids are strong, they fight and don't give up. I do think each surgery is harder on the parents and child than the previous one though, and it's a different ballgame once they really know what is going on. Gabe knows he'll need more surgery but doesn't like to talk about it too much. I try a little bit, but follow his lead on it. He will be difficult though, it's just how he is. He doesn't like unexpected things and dreads pain. He had blood taken a few months ago for something and I physically had to pull him to the room, kicking and screaming. I wonder if on some level he remembers that second surgery.

As for the modesty, I have a feeling that since she will have grown up with PC visits and echos she may not be as modest with regard to the heart stuff. It will just be a part of life for her, and I am sure her docs will help make it easier on her. Gabe was funny when he was about 6, I think. He didn't want to wear polo shirts b/c people could see the top of his scar, yet he'd walk around all the time with no shirt on and even play outside w/ no shirt on. It was quite funny that being shirtless didn't (and still doesn't) bother him. He shirtless right now and usually is when we are around the house!

Welcome to the group and I really hope the upcoming appointment goes well and she gets a bit more time before surgery!