4 1/2 Months old kid and valve options

[desiboyusa]

Hi Everyone,

Hope everyone is enjoying the summer.
I have been constantly reading the posts on this website for last few weeks. I don't have words to describe how greatful I am to get to know this site. You are all simply great.

My Son was born with Pulmonary Atresia with VSD.
His first surgery was when he was one month old on 04/05/06(Shunt).
He will be ready for the next suregy in about 6 months to one year(according to the doctor) from now. Next surgery they will place the Missing pulmonary valve. Cordiologist mentioned it is going to Homograft valve.

My question to day for you is, is mechanical valve an option for kids?

Do you guys aware of any research that's going on on making a valve from patient tissue and placing it in the missing Pulmonary valve position, so that his body recongnise it and grows as he grow.? Is it not painfull to go thru a heart surgery every ten years? My heart breaks everytime i think about my Sons future.

Thanks
DBU

 

[Georgia]

Welcome! I think many of us heaved a great sigh of relief when we found this site.

Frankly, I'm glad I'm the patient and not my children; you parents of kids with chd have all my respect and awe.

Those with more knowledge about this than I will be along soon. So glad you decided to post.

 

[Karlynn]

Welcome! We have some wonderful heart moms that are members here who, I'm sure, know a whole lot more about your issues than I do. I do know that babies, toddlers and younger children will have to have a mechanical replaced because of the growing they do. I'm sure your goal is to get your little son to adulthood with as few surgeries as possible in the best shape possible. This may end up being a combination of choices.

Welcome to our online family.

 

[doubletroublex2]

Mechanical valves in kids

Mechanical valves in kids

My son Caleb is five (almost 6) and just had a mechanical mitral valve put in. I realize that it is altogether different but we have always faced having to replace his MV. From my experience, they can and do, do mechanical valves in kids of all ages. The biggest problem is keeping the INR stable. My Card and surgeon are not very keen in using tissue because they have tendencies to calcify in kids quicker than adults resulting in additional surgeries sooner verses later.

I do not have any experience with valves made from their own tissue. I have heard of it but never had that done just repairs and complete replacements.

Hope this helps and welcome aboard!

 

[Lynlw]

My son is 18 and has a conduit and just got a pulm valve (bovine) most kids i know that have pulmonary valves (most have TOF or TGA,have tissue, either homograft, bovine or porcine) since many doctors feel that they will out grow the valve anyway while growing so no sense in getting a mechanical for it's longevity, actually justin didn't even have a pulm valve until he got one last year since his surgeon said that the pulm vlave is the one you don't really need and it would guarentee more surgery as he grew. as it was Justin has had 4 OHS. yes it stinks to have surgery every ten years or so, but it's just part of some of the CHDs our kids have to deal with.
If you are interested in the tissue engineered from the kids own stem cells I would contact boston's childrens since they are one of the hospitals doing research for that.
Do you belong to any groups that are for CHD? it really helps me to talk to other parents. If i can answer any other questions or you have any you'd like to ask justin feel free to email me, here is link to Justin's page www.caringbridge.org/nj/justinw
Lyn

 

[Guest]

DBU/Nik,

WELCOME!

Sounds like your son has similar issues as mine ... I was born PA, but from what I understand, they put a "band" in me for the first 4 years of my life. I was born in '73 and my first open heart surgery was in November 1977 ... when the replaced the missing valve with a pig's valve. I've had 2 open heart surgeries since then (March 1987 and January 2003).



Cort, "Mr MC" / "Mr Road Trip", 32swm/pig valve/pacemaker
MC:family.IL.guide.future = http://www.chevyasylum.com/cort/
chdQB = http://www.chevyasylum.com/cort/quilt.html
"Welcome me to stay overnight" ... Ingrim Hill ... 'Will I Ever Make It Home?'

 

[gijanet]

Hi, Nik!

Hi, Nik!

Congratulations on the birth of your son!! Welcome to the group, but I am so sorry you have to be here. I know firsthand the state of shock that you are existing in right now. You are stuck between the shock stage and the grieving stage. Hang in there. It does get better. Don't get me wrong. There are still days when I sit around and look at my Katie and get really angry and depressed over what she has had to go through and what she will have to continue to deal with the rest of her life. But there will come a time when your lives are almost normal. During those first few years, I would not have been able to convince myself of that...........but there will come that time for you guys, too. THe first few years are the worst. All timelines given by your doctors are rough guesstimates based on past cases. Your son will call the shots. Surgery will depend on how fast he is growing and how quickly he is outgrowing the shunt, and whether or not his VSD starts closing. (Katie's first surgery was the BT shunt as well; we made it twelve months.) You will not be able to plan things long term as you know there is a surgery looming in your future. THat will get better, I promise you.

Katie has now had five surgeries. We were supposed to have three, culminating with the fontan by the time she was three. So much for that gameplan. This is what I meant by speculation on the doctor's part. Katie had the BT shunt at two weeks of age; the bilateral bidirectional glenn at 12 months; her common AV valve (mitral and tricuspid are merged as one) repaired at 3 (this was a surgery that was not in the original gameplan, but doodoo happens ); and her fourth and fifth surgeries- the EC fontan and valve repair, then mechanical replacement (another surprise surgery) when her blood pressure bottomed out - were this past summer. In fact, one year ago today we were still camped out in the PCTU in Ann Arbor, Michigan. Today, life is good! WE know that Katie will never be completely through with surgeries, and she may have to be listed for transplant one day, but for now, we are through with surgery, and for that we thank God and the good folks here who have supported us, both morally and spiritually.

Why am I boring you with all of this? To give you hope. Try not to despair over your son's future. With today's medical advancements, he does have one..........and that's what's important. Things will get better.

Now to your questions:

Yes, very young children do get mechanical valves. We have a few on here. Katie was four when she got hers. Chloe was 1, I believe. (Hopefully, Emma will be along soon to square me away.) Amelia is just an infant. And Caleb is five. Dunno when Matt first had his mechanical valves implanted.........maybe Jeanne will happen along soon, too. They are all mitral or mitral type valves, I believe. For some reason, it is very unusual for surgeons to implant mechanical pulmonary valves in the very young. I do know several parents whose kids have had their pulmonary valves replaced, but they have all been homograft. Maybe someone like Tobagatwo will come along and help us to muddle through this one as to why. I suspect it is because the pulmonary valve is not working under as much pressure as the mitral valve, so the homograft valve will last longer. I dunno. Katie has pulmonary stenosis, but due to her other numerous defects and her palliative surgeries, this is a moot issue at this point.

What are your son's oxygen sats? I presume that when they implant the pulmonary valve that they will take down the BT shunt and close his VSD???

The one down side to young kids being on coumadin (besides the obvious - they are kids and a kid's main mission in life is to try and perform as many daredevil feats as possible) is that it interferes with calcium absorption and Vitamin K - and both are necessary for the formation of bones and teeth. When the very young are placed on a coumadin regimine, no one can say for sure what long term effect this is going to have on their bones and teeth. Those of us with young kids on coumadin are breaking new ground.

Again, I do have some friends who have had their kids pulmonary valves replaced with homografts and most have managed to get 7-8 years out of them. If your son's would last that long, they will probably be doing them routinely by cath by that time.

Okay, I have rattled on long enough for one night. Try not to despair. Try and focus on how lucky you are to have a son and that he was born in this day and age of medical technology. Please feel free to ask any questions or to vent. Many hugs. Janet and Katie P.S. By the way, Katie, despite having been through five heart surgeries, is a little spitfire. She is sharp as a whip and is a bundle of energy. J.

 

[Lynlw]

Janet, I think you are right here
do know several parents whose kids have had their pulmonary valves replaced, but they have all been homograft. Maybe someone like Tobagatwo will come along and help us to muddle through this one as to why. I suspect it is because the pulmonary valve is not working under as much pressure as the mitral valve, so the homograft valve will last longer.

and since this is the one valve "you don't really need" that's why they use tissue, plus when/if they start to stenosis or calcify they can go longer before replacing w/out causing problems,
beside the oxygen sats, I would also ask what the gradient is at the right ventrical pulm valve, that is what we kept an eye on to know when Justin needed intervention at his conduit/pulm valve, Lyn

 

[Emma]

Hi and welcome to the group!

My daughter Chloe had her mitral valve replaced after having 2 open heart surgeries to repair various bits first. Her first surgery was at 6 weeks, then valve was replaced at 18 months so she was probably about the same age your son will be.

To my knowledge the mitral valve is always mechanical in children as a tissue valve in that position would take a bit of a battering (for want of a better expression) - pressures would be too high on it etc, but pulmonary is mostly tissue/ homograph in children cos it can stand up to pressures for longer without needing replacing quickly - in fact I dont know of a child with a mechanical pulmonary valve and I do know a lot of parents of children who have had PVRs.

If i can help you at all please let me know!

Love Emma
xxx

 

[desiboyusa]

Thank you all so much

Thank you all so much

God I am so blessed to be here. Thank you all for your experties and more importently sharing them here. I will respond soon with any question I may have after reading all the responses.

Thanks
DBU

 

[Bryan B]

desiboyusa,

I had a Ross Procedure where they take your healthy pulmonary valve and use it to replace your diseased aortic valve. Then they put a homograft pulmonary valve in the pulmonary position. I'm not aware that mechanical valves are used in the pulmonary positon. I believe the reason for this is that the pulmonary valve is under much less pressure than the other heart valves, therefore a homograft or tissue valve may last upwards of 25 years and maybe more in adults. I know much less about children who need a pulmonary valve...I would suggest you ask your doctor/surgeon these questions and see if they mesh with the information you're getting here.

Welcome!

 

[desiboyusa]

Hi Everyone

Hi Everyone

Thanks guys for your time.

Let me start from the first reply.

Georgia,
Yes, it's great relief indeed, i did not think there is something like this exists.
Thanks for welcoming me.

Karlynn,
Yes, there are unbelievably great and caring moms out there. As some one put it "I would rather be a patient and be a son to you Moms"(or something like that)
I appreciate your warm welcome.

doubletroublex2,
How is Caleb doing now? I bet He must be feeling mush better after the Valve replacement.
I guess it makes sense to put the Mechanical Valve in place of Mitral Valve because there is lot of pressure.
Thanks for your reply.

Hi Lyn,

I know Justin thru one of the yahoo CHD groups (congenitalheartdefectfamilieskansascity,chdring). He was in my prayers. How is he doing now after the surgery?
It's a big news to me that Pulmonary Valve is the one that is not really needed (or atleast much less important one than other valves).
I use to read Justin's Web Page, I did not no Justin did not have PV until last surgery. What is this you are referring to in his Page?"part of the repair included having a conduit (tube) go from his right ventricle to his pulmonary Artery". Is it different than PV?

Yes, i am proud to be part of congenitalheartdefectfamilieskansascity,chdring yahoo groups.

Hello knightfan2691,
How are you doing?
I am so sorry to hear you had to go thru 3 OHS, hope everything is going well now.
Yes, it is same issue my Son has(PA) except that he has VSD. How is life like with this defect? I know one can?t play foot ball(soccer) and some other games but otherwise what is it like?
Thank you so much for your time.


Good Morning Janet,

How are you doing?
Thank you so much for your kind words. Yes it does get better as the days pass by.

I am so sorry to hear little Katie had to go through five surgeries. She must be a real fighter. I am glad to know she is through with Surgery for now. She is in prayers.

You are not boring at all, it helps me to better prepare and understand.

That's what i found in my research Homograft is the one they implant for PV replacement. Wish it lost longer than 10years(at least 100 years so that my son gets to see his great grand children and have his own house in the space).

Nik's Oxygen sats are 75% to 85% post Shunt operation. After four weeks of his birth we went to regular check up with Cardiologist, then his Oxygen sats was around 45%(he was crying thou) so he immediately admitted to NICU for surgery. At one point they tried to give him Prostaglandin or something before the surgery due delay in performing the surgery then his sats went down dangerously low levels (25% or so) and he was breathing once in every few seconds, at this point i was devastated, I thought he was slipping away. Immediately they stopped Prostaglandin and his stats were back up to 50% in few minutes.
He had little bit of tough time coming out of Ventilator but after that he sailing thru and never looking back. His weight is not so great, born with 6 pounds he is now weighing around 13 pounds.
Yes they mostly close the VSD when they implant the PV.

?routinely by cath?? Is this possible? That would be really great. What else could I ask for if this becomes routine. That would be really amazing.


Hi Emma,
Thanks for welcoming me, i will surely ask if I have any questions.

Bryan,
Thanks for your reply. It would be great if we get 25 years out of Homograft valve. I am just trying to understand all the different types, longevity and people experience, yes I will surely mach the info I gather every where with doctors sugetions. After all they are the ones with ultimate expertise and can decide the right choice based on each case unique situation. Ofcourse what we gather outside differs too much with what doctors are saying, we would get a second opinion from a different doctor/hospital after all he is my kid and he is my life.


Thanks Once again guys for all your replies.

Thanks
DBU

 

[Lynlw]

Thank you for the prayers, justin is doing really well, back to normal what ever 'normal' is lol. I'm glad you belong to chd groups, i saw you were in kansas and was going to suggest getting ahold of chd fam there.
ok i hope this isn't too simple, feel free to email me if it is. MOST TGA can have a switch where they put the pulm artery and aortya are switch back to where they belong. but justin had pulm stenosis inside his heart so wasn't a canidate for the switch since the blood still wouldn't get to his lungs thru the pulm art, so had to have a rastelli, there is a good diagram here in the chapter on surgeries chapter 6http://www.childrensheartfoundation.org/its_my_heart.htm

part of the rastelli involves a conduit that takes the blood from the right ventricle to the pulm artery the conduit can either have a valve or no valve. when Norwood did justin's first conduit he used alot of his own tissue to make the conduit and left out a vlave in the hopes it would grow w/ him and he wouldn't need as many surgeries groing up, it kind of worked, since he didn't need his conduit replaced until last year, becaus of calcificatoin and stenosis. his new conduit is made of dacron and has a valve inside it that is bovine

about the replacements by cath, they actually have done some and I believe the pulm will be the easiest to replace that way. BUT what will be huge is the tissue grown thru the kids own cells, you should contact holly turners parents the link is on the bottom of Justin's page,i think it is miraclehearts.org they have been working w/ the doctor at boston doing the research, they have fundraisers just for that particular research so they know alot about how the research is going. last year when Justin had his surgery at CHOP the docs there really believe (well the ones i spoke to) that by the time Justin needs his nest conduit and valve, they will be able to go w/ the engineered ones, which would be a Blessing since in theory it would be the last one he would need,
feel fre to email me , Lyn

 

[Mary]

Hi Desiboyusa!
Welcome to the group! It's a shame you have to meet us in this manner, but you know we all take what we are given!
You've got a great group of heart moms to mingle with, so relax and let others offer you a shoulder to lean on.

Mary

 

[Gnusgal]

By the way, Katie, despite having been through five heart surgeries, is a little spitfire. She is sharp as a whip and is a bundle of energy. J.

I just want to pipe in here. I have met Katie myself on more than one occasion. Both before and after her last couple of surgeries. And I can verify 100% that she is every ounce a "spitfire"! She's got more energy than I could have ever had at that age. We often talk about bottling up her energy and selling it to others here on VR. We'd make a fortune!

So you see, even with the surgeries and all that we CHDers have to go through, it's not a "doom and gloom" sentence. Yes, there are tough times. But Nik will be a fighter too. I've often believed that God gives us "special" kids to just the right parents, because He knows that we'll get the extra care we need. I know my mom was great, and so are all of the moms here on this board. You're just what Nik needs. XOXOX

 

[sylviayasgur]

hi DBU/Nik,
welcome... although i almost wish you wouldn't have to be here...
it's a great place, as you can see for yourself. everyone here is so suportive, helpful and informative.... great handholding too.

my husband, joey, had his ross procedure done almost 5 yrs ago and while researching the ross, i came upon a pediatric ross surgeon at columbia pres, nyc named jan quaggabeur (he did pappahappystar's_burair's_ ross procedure).
one of the reasons ross surgeons like to do rosses in children is that they claim that the valves grow with the child so that would_again, hopefully_ reduce the necessity of frequent resurgery.
on the other hand, i've read that valves tend to calcify much faster in children than in older folks...
i can only figure that this would be one of the reasons to use a homograft.
you are fortunate that he is still young and technology in this area seems to be advancing. hopefully, he will be able to take advantage of some new things in the years to come.

glad to have you among us.
stay well and please keep us posted,
sylvia

 

[Bryan B]

Bryan,
Thanks for your reply. It would be great if we get 25 years out of Homograft valve. I am just trying to understand all the different types, longevity and people experience, yes I will surely mach the info I gather every where with doctors sugetions. After all they are the ones with ultimate expertise and can decide the right choice based on each case unique situation. Ofcourse what we gather outside differs too much with what doctors are saying, we would get a second opinion from a different doctor/hospital after all he is my kid and he is my life.

desiboyusa,

I'm sorry if my statement confused you. I was stating that in adults, 25 or more years is not uncommon. This could be true for children too but I don't know enough about pulmonary valve replacement in children to substantiate that statement. The only reason I've done any research on pulmonary valve replacement is because mine is ticking away in the aortic position and some kind soul donated a spare one for me.

 

[Guest]

Hello knightfan2691,
How are you doing?
I am so sorry to hear you had to go thru 3 OHS, hope everything is going well now.
Yes, it is same issue my Son has(PA) except that he has VSD. How is life like with this defect? I know one can?t play foot ball(soccer) and some other games but otherwise what is it like?
Thank you so much for your time.

*nods*

You are welcome.

To answer your questions ... I'm doing fine. Have some issues "here'n'there", but nothing I can't handle (so I'm told ... he he he).

I can't play sports, of course, but otherwise, I'm very active ... or, relatively speaking. I take road trips by myself as much as possible ... and try not to let too much get in my way .

 

[Karlynn]

*nods*

You are welcome.

To answer your questions ... I'm doing fine. Have some issues "here'n'there", but nothing I can't handle (so I'm told ... he he he).

I can't play sports, of course, but otherwise, I'm very active ... or, relatively speaking. I take road trips by myself as much as possible ... and try not to let too much get in my way .

We can all atest to the fact that there is no dust on Cort! He's here, he's there, he's everywhere!

 

[gijanet]

Wow!!!

Wow!!!

Nik's Oxygen sats are 75% to 85% post Shunt operation. After four weeks of his birth we went to regular check up with Cardiologist, then his Oxygen sats was around 45%(he was crying thou) so he immediately admitted to NICU for surgery. At one point they tried to give him Prostaglandin or something before the surgery due delay in performing the surgery then his sats went down dangerously low levels (25% or so) and he was breathing once in every few seconds, at this point i was devastated, I thought he was slipping away. Immediately they stopped Prostaglandin and his stats were back up to 50% in few minutes.
He had little bit of tough time coming out of Ventilator but after that he sailing thru and never looking back. His weight is not so great, born with 6 pounds he is now weighing around 13 pounds.
Yes they mostly close the VSD when they implant the PV.

?routinely by cath?? Is this possible? That would be really great. What else could I ask for if this becomes routine. That would be really amazing.

DBU

Sounds like Nik had a pretty tough go of it for awhile, too. I'm so glad that he is doing better now!

Weight gain in heart kids is a tough issue. Katie was born full-term, 6 lbs., 8 ozs. (course she lost quite a bit from the NEC scare and surgery -s he left the hospital weighing about the same that she did when she was born and she was 8 weeks old by then) and only weighed 19+ pounds at 12 months. The weight issue should improve after his next surgery.

Yes, they really are replacing valves by cath, but not routinely yet. A close friend has been corresponding with a Dr. Hijazi in Chicago who has been doing them on a case by case basis. Her daughter is not a candidate at this time, but he said that she should be by the time the next one needs replacing. So that sounds very, very promising. Unfortunately, my Katie will never be a candidate (God forbid that we should ever need to replace this mechanical one) due to her unusual plumbing, but I can get excited about this for others.

Keep us posted. Many hugs. J.