Worried Mum - Infant Aortic Stenosis - Surgery

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OzAnnie

Hi from Australia. My gorgeous boy is 9 months old. In my 20 week ultrasound we were diagnosed with a cleft lip and possible palate. My husband and I were devastated but we were given tremendous support from our cleft group. I kept reminding myself a cleft is fixable - at least his heart is OK (I was scanned frequently). Our boy entered the world with a unilateral cleft lip and gum
We got a surprise heart murmur at birth and on day 3 of my sons life we were diagnosed with Aortic Stenosis. We prepared for either balloon or surgery at birth however the cardiologist waited until he was 3 months old and did a catheter with 2 balloons. We had complications, his left leg was cold and he lost a pulse in his foot however the stenosis was reduced to trivial and there was no regurgitation on the valve.
At our 3 month follow up there was mild plus regurgitation but the stenosis was still trivial. My cardiologist was not real happy but said it may settle ? wait and see. The last appointment was a disaster, it does not help that I go numb in them. The valve is leaking, the left ventricle is compromised we have to have open heart surgery ? the way my cardiologist spoke it sounded as though it was going to be a repair but it will be up to the surgeon, maybe a transplant of the pulmonary valve.
I am scared out of my wits! We thought we were going to get 10 years from the balloon, my son has also started on medication captopril 3 times a day.
Could a mum share her experience? I am dreading he will have many heart surgeries, won?t be able to play sport. I am also concerned about endocarditis considering he has a lifetime of orthodontics and more surgery for his cleft.
He is a such a beautiful boy, he has had his lip repair done and it is fantastic. He has no symptoms and is happy and seems to take everything in his stride. I am just so scared I will lose him and although we are trying to get back to some normality I can't stop worrying!
 
Hi there - firstly as a fellow Aussie - welcome to VR.com. I can't imagine what it must be like to have a child with a heart condition. The only advice I can offer is I don't know which state you are in but the cardiac centre at the Royal Children's Hospital in Mebourne is first class. Perhaps you could seek advice from there if you haven't already done so??? There are also other heart mums on here who may be able to help. - Jeanne
 
I managed to get 17 years out of the stretch i had done when i was 19 so i am dissappointed that id did not work for you.

I can handle the issue as its me with the problem, not sure how strong i'd be if it was one of the kids.

Basically, interview several cardiologists and surgeons to get different opinions and spend loads of time on this site reading reports and asking questions.

I'm in WA and my surgeon was the muts nuts, he is also a kids surgeon (couldn't spell peadiatrician) so if you are in WA go see David Andrews, at the least get a childrens specialist who deals with birth defects not just a general cardio thoratic surgeon.

In the two months i've been on this site i've gone from numb to sitting in appointments asking a long list of questions and not leaving without answers so you have arrived at the right place.

My thoughts are with you and yours.
 
Hi I was just getting ready to sleep (it's 3am here) but wanted to let you know, I have an idea how you feel. My son Justin is 18 and was DXd w/ his CHd when he was one day old and turned blue, he had his first heart surgey at 10 day, then 18 months then 10 year and 17, BUt has had a really good life so far, his page is in my sig, if you would like to read. (he was snowboarding already last weekend.
there is a really good CHD support group in Austrailia, one of the board members is on a few of my heart groups here is the link http://www.heartkidsqld.org/index.html
also if you would like i can give you the link for some online groups like this that are mainy the parents of kids w/ CHD and a few adults w/ CHD. well I'm starting to not think right, so feel fre to email me if you have any specific questions, at [email protected] lyn
 
I just wanted to say welcome. I'm the one the heart problem so I can't share the experience of having a child with one. There's lots of knowledge and experience here so you have come to the right place.

Take care.
 
Hang in there. There is not much else to say. My son is 16 and had 2 emergency OHS 5 months ago and has another OHS next March. We are moms, worrying is what we do. The numbness is God's way of getting you through it and allowing you to make decisions for your child. I have good days and bad days. This forum has been great for me - even to just know that we are not alone. Do not expect too much from yourself, this is a traumatic event in your life and it will take you as long (or longer) to recover as it will take your child.

There are other moms on this forum that have been at this a lot longer than we have - they have good insight.
One day at a time.
 
(((hugs)))

(((hugs)))

Welcome to the group, but so sorry you have to be here! This is a great group, but I hate the "dues"! ;) Congrats on the birth of your son...............and yes, there is life with congenital heart defects!

My daughter Katie has numerous heart defects. She has had five heart surgeries and just turned six. She is in kindergarten and doing great! She is adorable and a hoot!

I'm a tad bit confused by your post. My butt is dragging so forgive if I missed something, but if your son has aortic stenosis and the left ventricle is enlarged, why are they talking about possibly replacing the pulmonary valve? Did I miss something or am I just tired? :confused:

One thing that I have found to be very helpful is to write down all of my questions and write down all of the answers - yes, I make the doctor wait while I do so. I also used to tape record (with the doc's permission, of course) the entire appointment. That way, you don't have to worry about writing stuff down and you can play it back later when you need to.

Try not to worry about life down the road just yet. YOu will learn that it is much easier to take one day at a time. Easier said than done, I know. Sometimes, I find myself worrying about the day that Katie realizes she is "different" or the day I have to break it to her that she can't ride a horse that she is dreaming about or the day I have to tell her she can't have kids................but then I realize I will absolutely go insane worrying about all of this. We will take it one day at a time and try and focus on all the things that she CAN do.

Things will get better and easier. Our first year and fourth year were the worst. If we can help in any way, please give us a shout. Hugs. J.
 
P.S. forgot to add

P.S. forgot to add

that it is not unusual for our heart kids to have occluded vessels, so don't panic. Katie's femoral vessels are completely occluded from her eight week hospital stay at birth. (They have to do her caths through the neck. BTW, have they done a cath on your son recently?) She has formed collaterals, obviously, but her sats never read as high in her toes as they do her hands. It doesn't slow her down any. :D

Also, many of our heart kids are on captopril or enalapril. Katie has been on captopril and aspirin since birth. (We added the coumadin after the valve replacement at four.)

More hugs. J.
 
I guess I can share a little of your concern, but only a little. My grandson, at 2 months, was diagnosed with a bicuspid aortic valve. Probably genetic and probably from me. Our good news was 'not to worry now and maybe not ever. We will watch him every three months and see what develops'.

Your concern is obviously so much greater and more immediate.

I can tell you there have been so many advancements, and more being made daily, life in our future won't resemble what we know now.

You have came to a great site for advice, help, prayers and just about anything else.
 
Thank you

Thank you

Thank you so much to everyone for the posts.
I must say that everyone here is so positive and supportive. I feel like I am in the right place! I am learning so much about the heart.
From what I can gather when my cardiologist mentioned the pulmonary valve maybe he was referring to the Ross procedure for the aortic valve?? I don?t want to jump to conclusions but after reading several posts on leaking aortic valves it adds up.
The surgeon will make the call I suppose and I just have to wait for the next appointment in January when we have the next echo. It is a wait and see situation which is soooo frustrating but I guess little people are difficult to work with. We have been told since birth that my son will need surgery on his aortic valve at some point in his life. I was kind of hoping it would be when he was an adult not a baby.
I will keep posting here as I am sure I will have lots of questions, any links will be great. Hopefully one day I can support another mum in the same situation. For now I have to get educated with all of the heart terminology. After the catheter and balloon was done at 3 months I quite honestly wanted to put the whole experience behind me and not think about it again. I was too optimistic.
Thanks for your support everyone, I really appreciate your replies. Will post again in January and will have a better idea on what the future holds. For now I really have to take one day at a time and pray! Annie

Mum to Sasha 9 months old ? CHD Aortic Stenosis - Bicuspid Aortic Valve - Cleft Lip
 
Hi I think you are right about them talking about doing a Ross. On thing about a Ross is you have to make sure the surgeon has alot f experience doing ross's. I think if you contac the heartkids group they can prbably help you with alot of questions about which docs/centers are best ect.Lyn
 
Update on Surgery

Update on Surgery

Hello I was not quite sure if I should use the same post but I thought I would share an update on my son.
I went in to my appointment armed with my questions, this time I took my husband just in case the numbness set in - Anyway - the left ventricle measurements have not changed and my cardiologist was happy to leave things as they are for now with my son on medication captopril.
So it looks like a wait and see! He has moderate regurgitation on the valve - we are back in 3 months for another echo and we go through all the worry again. I guess he is getting bigger and stronger and that is what we want before surgery.
Thanks again for all the replies - I will keep updating!
Annie and Sasha
 
Glad to hear that things are holding steady and buying time. Thank you for giving us an update. Best wishes!
 
to OzAnnie

to OzAnnie

I could not read your post and not respond to it.
Well my son was born with the same defect as yours...I too had many a ultrasound although they were supsecting something else with him and there was no mention of any issues with his heart.
My guy was born with critical aortic stenosis..one up from severe...but does it matter at that point. He was around 115 across the valve. So they did a balloon dilation(got him down to around 35) and then we were told in a few months to expect another and then another around 2 years...well they really did not know the path he would take but they probably told us that so we would not be surprised if he did require more intervention. Our son had the same effect as you described with the cold leg..except his was in his right foot and he needed enoxaparin injections twice a day for 3 months at home...an expected complication from the ballooning at that young of an age. Anyhow...all went fine until this past summer when he had a bout of angina while riding his tricycle..poor little man...and off we went for another balloon dilation(2year old and a bit) which got him even lower to around 24 or something..with very mild regurgitation. So it is a roller coaster of uncertainties...his cardiologist did not expect any intervention for a very very long time just prior to the angina...so who knows what or when the next bit of excitement will occur. Ask ask ask and then ask some more. Perhaps I know too much about my sons defect but I have come across those in waiting rooms with kids with far off worse heart defects and they know next to nothing about it or describe it as being so nothing. These people scare me...they really do. As for exercise...we have been told no isometric exercise or anything that causes you to do that grunting kind of action like lifting something really heavy...and definitely no power lifting...tee hee. We are big hockey fans here so the thought of no competitive sports is a real bummer...but there are milder levels of hockey which I hope to have him participate...these are all things we will be discussing in the next year as it will be time to sign up for stuff like that. He has taken an interest in golf so that is good. I have to say that just getting 2 or so years under your belt and knowing that they are getting older and stronger is so helpful...I didn't even care to experience the really early years, as sad as that sounds..(he is 3 next month)..but I did want him to get big and strong..which he is!
We need to strike a balance by staying informed and educated but not smothering and defining them as a person with a heart defect. Ous sons cardiologist has been very good about instilling that in us. We are human..we will worry...and some more than others(included).

I wish you the very best of luck.
Theresa....shivering in Canada
 
I was diagnosed with stenosis 11 years ago, but I was born with BAV. I have lead a normal, active life. My only restriction was not to run a marathon. :eek: No worries there...

This diagnosis isn't the end of the world. Keep on top of the symptoms and report them to the cardiologist.

Being at peace and living one day at a time is very important. Don't focus on this issue. Live life and enjoy. It's out of our control anyway, so why worry about it. I don't mean to sound flip, I've had a few moments, but for the most part, these last 12 years have been active and energy filled. I woke up with energy and a positive attitude with my motto, silly as it sounds. "Life is great, life is grand, life is like a rubber band." - Jackie Beach. It really is all in your perspective. Good luck.

-------------------------------------------------------

1995 - TIAs (mini strokes) started after birth of my daughter, Aspirin started.
1996 - BAV w/mild stenosis diagnosed.
2003 - PFO (hole in heart) fixed w/Amplatzer. 3 catheters up the legs.
2003 - FVL (clotting disorder) diagnosed, Coumadin started.
2/16/07 - BAV w/severe stenosis, Mechanical Valve, Dr. Suri, Mayo Clinic.

Expect the best. Prepare for the worse.

I intend to live forever -- so far, so good.
 
Well I am not a mom, but I too was diagnosed with Aortic Stenosis as an infant and had to get OHS at 2months. The only thing they did was the balloon, back then though OHS was the only way to do it. The balloon procedure lasted 20 years for me, so that was pretty long, and didnt start taking any meds until I was 12.
 
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