How rare is congentital MVI : any valve for new born?

[Amelia_mom]

Hi my daughter born on 18 Oct 05 (birth weight = 3.8kg) was diagnosed with servere MV regurg. Doctor said hers was congenital and said it's VERY RARE and very servere. Maybe in a small little island like Singapore - where we don't have a huge popultaion - it's rare.

Amelia has gone thru 1st OH at 3 weeks old to repair. But due to the servere deformity of the valve - it was not successful. So the surgeon tried to repair 2nd time just 2 days shy of 2 moths old. The surgery looked ok first fews hours but the whole thing just broke down. In the end he had to replace with a St Jude - a 17mm the very next day. We are just hoping that while her heart is recovering from the 3rd OH, it'll work fine and let her grow with the valve.

My question is it is so rare to have congenital MVI such that there isn't a small valve for babies? There is another baby in the ICU with my daughter - same problem but he was borned a premie and diagnosed at 4 months old. Surgeon says there isn't a valve small enough for him.

Don't companies make small valves? We are living in morden times - we make micro chips smaller fast, we make camera 3G phones so tiny even our fingers are too big press the buttons and so on.... why there isn't a smaller valve?

 

[Karlynn]

Welcome Dawn!

I don't know anything about babies and heart issues, but we do have Moms here who do. I'm sure they'll be around shortly. I know that they are also members of an online community for pediatric Congenital Heart Defects as well. So I know that information is not far away.

 

[hensylee]

Mornin, Amelia - I am so sorry to hear about your little baby. It's so painful when it's a little one. We have a couple of little girls who have had the surgery, but I don't recall any tiny babies, only a few who had a hole in their heart. I am sure the mommies will be along soon to help here.

Welcome to VR. This is a good spot to ask questions, if we can get your first one answered. Don't give up on us. This being the holidays, some of us aren't posting as much til we get back our regular routines.

 

[Georgia]

Hi, Amelia. Welcome to the site. I'm afraid I'm also no help with your questions. But there might not be a lot of response because of the holiday weekend. Those who know will be along, however, when they get home!

 

[geebee]

Hi Amelia and welcome.

I am not sure of the correct answer about small valves but my guess would be that you don't want to use too small a valve or more surgeries will be required as the child grows. Even with the 17mm, your daughter may need another surgery when she is older because her valve will be too small for her heart size. However, this is speculation on my part and may not be the reason.

I hope things go well from here on. I am sure you must be going through hell but, hopefully, we can help with some support.

 

[Lynlw]

I'm sorry about all your daughter has been thru. my son was also born w/ complex CHds but different ones. I don't know the answer about the smaller valves, but honestly when Justin was born and needed his heart surgeries, he had to have a shunt placed because his heart was about the size of a walnut, so had to get bigger before they could rebulid it. So if the heart is the size of a walnut, I can't imagine imagine how small the valve would have to be and could see how it would be hard to make the valves that small. Lyn

 

[gijanet]

Welcome, Amelia!

Welcome, Amelia!

I am so sorry that you have to be here, but I am glad that you found us. I am also grateful to hear that Amelia is now doing well with her recovery. A 17 mm valve should last her into her early teens............with an emphasis on should, depending on how fast she grows and her genetic makeup.

You ask about rarity...........hmmmm! First, let me say that I am no expert whatsoever, but I have done some research out of necessity. My daughter (just turned 5) just had her common AV valve replaced this summer (considered to be mitral, but is actually her mitral and tricuspid merged as one functioning valve; this is part of her complete AV canal defect). Mitral valve problems in kids is not that rare. What does seem to be rare is that mitral valves actually have to be replaced at such an early age. Most kids with mitral valve problems have a mild to moderate stage of regurgitation, and this is controlled for a time through ace-inhibitors. Others are able to undergo a repair that buys them some time. (Our roommate after our third surgery was a six year old girl who had undergone a mitral valve replacement. Her mitral valve was repaired as an infant, so the repair bought her almost six years - enough growth time for the surgeon to be able to place a small adult size valve in her.) Others have such a combination of complex defects that the mitral valve regurgitation does not have to be immediately addressed. Other palliative surgeries are performed, like the BT shunt.(Katie had severe pulmonary stenosis, but because of her other defects, she underwent the BT shunt procedure. Her common AV valve regurgitation was mild at that time, so it was just a hide and watch situation, and she was on digoxin.)

Again, no expert, but I think that it IS rare for a baby to have to have his/her valve replaced at such a young age. I do know that there was an infant in the PICU when Katie was born who had to have a homograft valve put in because there was no other choice for her size. I apologize, but I do not even know which valve it was as I was overwhelmed with our own plight at the time. We spent 8 weeks in the hospital that time, hovering between life and death for the first seven. Tissue valves do calcify very quickly in children, but a tissue valve would allow the baby growth time. Hopefully, the valve would last for a few years, allowing the baby to get bigger and gain weight. It sure beats the alternative, and I would very strongly encourage his parents to pursue it.

I'm sorry your own daughter has been through so much. We, too, had a repair that didn't last. We found out one month post-op it was not holding up and we were almost as bad off as we were before the repair. What a blow. That is when I found this group of wonderful people. They have kept me going at times I did not think I could go on. I get all weepy-eyed when I think about it..............

Anyway, we just had the fontan and another valve repair this past summer. Just before leaving the OR, Katie's blood pressure bottomed out, and they had to open her back up. In order to get a good repair, it was too tight and Katie's heart could not handle the abrupt change. So a mechanical valve it was. Katie, at four, was able to get a small adult size Carbomedics, so hopefully, and God willing, this will last her until she is a young adult and I pray much, much longer.

Well, I could ramble on forever. ONe last thought, though, if it's so rare, then isn't it odd that there are two of you right there in the PICU at the same time with babies needing mitral valve replacement. I do know, however, that when I tried to find a parent who had had a child undergo the fontan and a valve replacement, I never did find one. I did finally find one whose son had already had the fontan and then had to have a valve replacement.............so dunno.

Sending my love and hugs and will keep Amelia in my prayers. Please ask if there are any more questions I can confuse you on more. Janet

 

[Emma]

Hiya, Welcome to the group! I'm Emma and mum to Chloe, whos just turned 6 and had a mitral valve replacement when she was 18 months old but very small (only weighed approx 8kgs at the time), so near enough to being a small baby. Chloe had had 2 failed repairs on her mitral valve prior to replacement.

So sorry you had to find us but you have come to the right place.
Firstly, I'm not overly sure how rare it would be. To get mitral regurg as part of another CHD as my daughter did is not that rare, its not the most common CHD but not unheard of either. However if your daughter purely has the mitral regurg then I do think thats slightly less common. I have a friend over here who has a little boy with mitral valve incompetence who has only that condition and she too was told its rare on its own.
Good to hear Amelia has had the replacement and is doing well I assume?? I don't think there is a valve smaller than a 17mm due to the size of babies hearts so its lucky Amelia was big enough to recieve that one. It 'should' last her quite some time - until teens I would have thought, as Janet says though, dependent on growth and the valve being ok.

Chloe had a 25mm ON-X valve at time of replacement because although she was very small, her heart had enlarged incredibly so the surgeon could get an adult sized valve in and she's growing fine with the bigger valve.

I'll leave it here and look forward to getting to know you both better soon!

Love Emma
xxx

 

[Christian]

My wife was born with a cleft in the posterior leaflet of her mitral valve that caused mild-to-moderate regurgitation (based on the diagnostic tools that were available in the late 1970's). The regurgitation didn't evolve to "severe" until she was in her 20's. Her valve was repaired when she was 32. We never knew the root cause of the problem until she was opened up.

All I can offer is the fact that she did have the defect from birth and it always caused some degree of regurgitation.