3month old son having cath-need advice

[bellotti]

Hello, I just found this site today. What a great resource.
My son Asher is 2&1/2 months old. He was diagnosed with a bicuspid AV at birth. At that time the pressure gradient (???) was 18mmHg, considered mild-mod. Well, at his check up this week it was now averaging 48mmHg, bordering severe. Our Cardiologist (Dr. Timothy Cordes at Riley CH in Indianapolis) said he needs a balloon cath and after consulting the interventional Cardiologist
(Dr. Mark Hoyer) we are scheduled for the 22nd. Needless to say we are in a state of shock, never expecting things to progress this rapidly. I've been doing the research on PubMed for statistics and such.
I posted here because I would greatly appreciate any advice anyone might be able to give my wife and I in dealing with our sons condition and the potential future surgery(s). We haven't met many people yet that can give us any help. Looking at statistics and potential for multiple surgeries, the future looks depressing But I see people on here who have been and are currently going though it and seem in great spirits.
Thanks,
Pete

 

[TikTak]

Hello, sorry to hear about your sons condition and to say that I do not have any personal experience or real advise other than that one of my relatives has a son that was born with BAV with stenosis. He had OHS for a repair as an infant. Since then he has had regular check ups, first every three moths or so then every 6 months and now every year if I remember correctly.. So far (he is now age 4?) he's been doing great although the doctors first thought he would need another OHS in a couple of years. Of course he'll probably need more surgery in future (no one knows when) but I just saw him a couple of days ago and he really seemed do be doing OK, running around and playing just like other children do.

 

[Phyllis]

So sorry to hear about your son, but we have many heart Moms and Dads on this forum who will chime in soon and I know will provide you with all the encouragement and advice that you seek now. Janet (GIJanet) and our wonderful Katie are now on a cruise to Alaska (life is good after AVR ) , but I am sure that Janet will be glad to private message with you and will be a wealth of information. Best wishes to you all.

 

[Emma]

Hi,
I'm Emma, mum to Chloe who's 6 years old now. She's had 3 open heart surgeries and a cardiac cath.
The cath is considered to be the most minor of heart surgeries although I know very well that ANY surgery or procedure involving your own child is anything but minor!! I know I worried about the cath as I worried about everything else with Chloe.

The cath however, was a relatively quick procedure - about half an hour - and she was back with us in the PICU within an hour of leaving there in the first place with no ill effects and just a plaster over the area they went in on her groin.

Do you know what it is they are planning to do with the cath? Are they repairing or diagnosing with it??
Do you know if they want to replace the valve?

To give you some hope for the future though (as I'm sure other heart mums and dads on here will do soon too)...
Chloe had her first open heart surgery at 6 weeks of age and the rest of her operations at around 18 months where she had her mitral valve replaced.
She was so poorly before all this and I was so scared at putting her through all that but to look at her now you (until you see her scars) you would never know what she went through! She a very bouncy and normal little 6 year old.

I'm sending you lots of love cos I know how scary all this is. I'm happy to answer anything else you need to know whenever you like.
Lots of love and good luck for the cath!!
Emma
xxx

 

[Ross]

Hello bellotti and welcome to the forum

He is so young that balloon angioplasty may be the only thing he needs until later in life. From here, it's hard to say where it will go until he grows up, though I suspect he'll need the valve replaced at some point in time in his life.
There really isn't much to say on the subject at this point. With kids, it's always "wait and see". Hopefully, he'll be able to keep his native valve long into life and then make the choice of which valve to go with on his own. Don't worry about that right now. It's not in the immediate picture..

 

[Lynlw]

Hi welcome to the group that noone ever wants to join, But there are alot of great people that know exactly what you are going thru and how you feel. My son Justin is 18 and has different CHD (congenital Heart defects) he had his first cath at 3 days and we didn't know he had any problems until he was one day old and turned Blue when feeding.
Hopefully the cath will be able to help and buy lots of time. here is a link to Justin page, he just had his 4th open heart surgery last may and has had many interventional caths www.caringbridge.org/nj/justinw i know it helps to see others that are doing really well, even if they chd aren't the same , Lyn
ps if you would like any links to groups that are mainly CHd parents and a few adults just send me an email, lyn

 

[Ashley]

Hi Pete,

I'm so sorry to hear about your little one's troubles - but try to be positive and know that with every passing year - the doctors get better and better at this stuff, and that the technology continues to improve.

I was born with a biscuspid aortic valve too, and had a balloon cath at 16 to open the valve (my heart was enlarged at this point).

It has been 9 years since that procedure - and I have lived a totally healthy and normal life.

I am 25 now, and about 2 years ago the valve started to narrow again, but my doctor doesn't see surgery for me just yet. Even though she thinks I will most likely need at least 2 surgeries for the valve in my lifetime, she assured me that I could very well live a long life. She also told me that it is possible (nothing is ever for sure), but possible that by the time I need a 2nd surgery, that they will be replacing valves via catheter. They are already doing this in elderly patients!!!

I know it must be very hard and very scary - but try to remember that a lot of us with compromised valves live happy and healthy lives (even if they are complicated time to time with surgery and hospital visits etc.) And, once the news sinks in a bit more, and the reality of the situation becomes part of your everyday life -- it does get easier and less depressing. I think everyone experiences that initial terror and depression - but it does ease.

I wish all the best for your family.

Ashley

 

[bellotti]

thank you all for your encouragement

thank you all for your encouragement

We do hope the balloon cath will buy him lots of time. But wow, having never known much about this condition and all of the sudden start researching about it can be very intimidating. Having a couple days now for it to sink in, we are calming down, facing the facts, and just trying to do whats best the Asher. Hopefully its a long, long time before we have to worry about the valve replacement. But its nice to find a place where you can get help from people who have been through it.
Thanks for all or your responses.
Pete

 

[azpam]

you have to understand too that children recover SO much faster than adults do!! one thing going also is the baby isn't walking yet so the recovery period truly can be controlled by you via dr. orders. no running after a wild toddler! try to relieve your fears and just the medical doctors do what they usually do best. diagnosis and treat.