Newbie...Mom of 13 year old w/Aortic Stenosis

[Lori B.]

Hi everyone...I am the mom of a 13 year old boy with Bi-Cuspid Aortic Valve/Critical Aortic Stenosis/Pulmonary Hypertension. We have just learned that he is now at the point where he needs surgery. He had his valve ballooned at birth and until now has had no other surgerys or complications. We have not seen any Surgeons or had any tests done yet, just his reg.Echo and Cardiology appt. in Nov. We are waiting for the call from the hospital to start the process. I have been prepairing myself for this moment for 13 years and still find myself breathless. That being said...I can only imagine what is going thru his mind. I have tried talking to him but he does not want to talk about it. I know he is scared and I just want to help. I would love to hear any suggestions you might have for me to help my son thru this. Thanks for listening.

 

[Boston Tiger]

Hi Lori,

You have come to the right place, since there are parents of children who have had OHS as well as posters who went through multiple OHS when they were in their teens or younger. They are going to be a great source of information for you and your son.

I see that you are in Attleboro, so you are in a great location for having heart surgery for your son. There are a number of outstanding hospitals in the area, and you should be able to find a surgeon you and your son are totally comfortable with fairly easily. That's a huge part of the process, because that sets you up for a good surgery and recovery.

 

[Superman]

While I can't speak for what your son is feeling, I can speak from experience growing up with BAV / aortic stenosis and knowing that surgery was coming at some point. I was 17 when I had my first AVR, but along the way I had four heart catherizations, the balloon procedure was discussed, and earlier surgery was discussed as well. I also got to wear a heart monitor to school and for a full 24 hour period to analyze a rhythm issue I was having.

Long story shot, when surgery was finally decided on, I was very mentally prepared for it. I'm pretty sure that it bothered my parents and other friends and family far more than me. I would probably have come off as "not wanting to talk about it" as well. Someone might have made the assumption that I was afraid as well.

Honestly I was more frightened about my latest AVR at 36 than the first one. Reason being I had more people depending on me with a wife and children of my own. As a teenager, I was likely more concerned about how it impacted me. There's a possibility that you're far more afraid than he is - so trying to get him to admit being afraid could just be bothering him.

Like I said - can't speak for him - but figured I'd throw in my own experience just for a different perspective. It is different growing up with it than finding out in adulthood or knowing somebody who has it.

 

[Greg a]

Sarahsunshine can surely relate to the fears and trepetation he faces and may have some thoughts for you

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters, there are some minimally invasive so ask away, there is a wealth of knowledge here for the future .....


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw recently added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[Lynlw]

Hi Lori, I know a little of what you must be going thru, my son is 23 now, but had surgeries at 10, 16, 17,19 (as well as 2 surgeries when he was too young to remember) and some interventional caths in between, that if they werent able to help him with stents or balloons he knew surgery was possible, since unfortunately his surgery at 10 was a completely unexpected ER surgery the day after a routine cath. In my experience it is pretty common for teens to not want to talk about it, or think of it much, (like Superman said above) So I always just let Justin know if he ever had questions or wanted to talk about it with me I would be there and if he wanted to talk to someone beside his parents that was fine with me, just let me know and I would find some one, otherwise I would leave him alone about it. Of course for the later surgeries,he kind of knew what to expect since he remebered pretty much everything from his surgery at 10. He usually would ask me a couple things and I was always sure to be honest, but also tell him the positives, like he has some of the best doctors in the world etc and they do very complex heart surgeries daily so are very good .. I dont know if that is the best way to handle it but it worked well for us.

I'm guessing you go to Boston's children's You could call and ask to talk to the child life person who works with the heart floor and ask them what they reccomend for 13 year olds having their first heart surgery. If your going some where else chances are they have someone like child life that could offer advice too. When you have a date, you could ask your son if he would like to tour the floor to get a better idea of what it is like, honestly tho Justin's main concerns was what game systems they had in the rooms ect and how was the food

There are a couple parents who post here, but I really reccomend the email groups at the Congenital Heart Information Network http://tchin.org/support/index.htm
There are a few kind of subgroups, but pdheart is the main one that is most active, there are parents with kids of all ages and all kinds of CHDs, so usually you will find others that either have the same surgeries or go to the same hospital.
I'm sorry you all have to go thru this, I know how tough it can be to have surgery hanging over your head during the holidays, altho honestly there isn't a good time to know your child needs heart surgery

 

[Allisoninoz]

Hi Lori,
I know it's a confronting time for you and your boy. I had my second OHS to repair my narrow aorta at 11. It's a difficult age to get it done because you're just discovering who you are - and of course, your body is starting to change. It may be some consolation that now - at 43 - I don't remember all that much about my childhood surgeries (and they were in the 1970s). I was in hospital for nearly two weeks both times. My understanding is that kids are out much, much quicker these days. Just as I was when I had my third OHS (Ross Procedure) 10 months ago - was in hospital for seven nights.
Once you have seen the surgeon, maybe get in touch with the hospital and talk to a social worker there - I'm sure they'll be able to put your boy in touch with somebody his own age who has been through it all and come out just fine. Remind him that it's something that just has to be done, that it will be over with and he'll be very healthy afterwards. Sometimes he'll want to talk about, sometimes he won't, so just respect that. He might be worried about whether it will impact on the process of puberty - maybe that's something a doctor could reassure him about. And tell him that chicks like scars - they'll think he's very cool and it's a great conversation-starter!
I'm pretty sure there's a website called Heartkids - not sure if it's Australian or not but could be useful ...
Good luck

 

[Lori B.]

Thank You all so much for the info. I will just follow Ryan's lead, he is a very smart and I know when he is ready to talk he will let me know. I have a great family who offer alot of support but its nice to know I can talk to people whis are going thru the same thing. I will give all this info to Ryan and let him make his own decisions. THANK YOU ALL AGAIN!!!

 

[sarahsunshine]

Hi Lori,

My step son (12.5 year old) just had open heart surgery on Nov 28 to replace a bicuspid, stenotic, and regurgitating aortic valve. He also had his mitral valve replaced, and his ascending aorta - which was a surprise the day of the surgery.

It terms of preparation, his bioparents decided that no one was to talk about it with him until closer to the surgery. This was actually more of a unilateral decision by his mom, that dad and I didn't really agree with. In retropect, what happened meant that we were able to discuss it with Skyler in more detail and with less fear.

Like your son, Skyler had his aortic valve ballooned at birth (well actually at 9 days old). Unfortunately, the procedure went awry and they tore his good mitral valve. At 15-17 days old they did open heart surgery and repaired his mitral valve. This lasted for 10 days until it was irreparably torn (possibly due to a mistake in medication). Skyler was then just kept alive through myriad infections until he went into heart failure at around 4.5 months old and they had no choice but to put in the smallest available valve that was too big for his heart (St. Jude 17mm). Skyler's parents were told pre-surgery by the surgeon (the same surgeon who did his most recent surgery) that he would likely not survive. Against all odds, he did. Since then, he went through his twice annual cardiac echo appointments, and several cardiac catheter procedures, and was told by everyone that he would need his mitral valve replaced by age 3-4 because he would outgrow it. But he didn't. At age 12, last August, they said that it was surgery time. In other words, like you, both Skyler and his parents (and me since I've been around since Skyler was 6), have known for years that he would need surgery. This was no surprise, but the anxiety does increase when it becomes reality instead of possibility.

So, with our ultimatum of not talking about his surgery from biomom, we decided that we would talk about heart surgery in general, and other people's surgery. This was actually way better than I thought. It meant that I frequently talked about various people who had heart surgery on this forum, the things that happened that are expected, and minor good surprises and complications that are pretty normal. "Person A had heart surgery today to for replacing his mitral valve. Do you remember which one that is?" "Person B had heart surgery last week to replace two valves and is already home." "Person C is home only 4 days after having surgery! WOW! Isn't that amazing!". "Person D had surgery and had trouble seeing for several days afterwards." "On this forum I was reading, people were talking about how funny food tasted after surgery." "On this other forum, I read that they really try to get you up and walking around as much as possible just days after surgery. It hurts terribly, is what most people say, though some people don't have that much pain. What they say mostly, though, is the more you walk around, the sooner you can go home." "There are a couple kids on the heart forum that I was reading. Ont of them was back swimming and doing gymnastics (normal) only 6 weeks post surgery. WOW!"

So, some of the other things we did were:
We found a children's heart group, and an older teen who had gone through heart surgery, and Skyler and she became facebook friends. She and Skyler met and she talked about her surgery with Skyler, so he would know what to expect. They talked a couple times, but it helped him realize that he wasn't the only kid to have this done.

I read a ton about different types of valves and surgeries (Ross procedure was a big one). I got myself to the level of being able to discuss with the surgeons what they planned in their language and be able to understand the charts and stuff at the hospital (neither Biomom or Biodad could).

Skyler got 2 On-X valves, and I found out how to get a free T-shirt for him with pictures of the valves on the front and "powered by On-X heart valves" on it. I also got him a ring made of On-X which I engraved with his name and surgery date.

Another thing I did was I read a whole bunch about physiotherapy, and "what to expect of open heart surgery" from various places (there are a bunch posted and stickied in the pre-surgery forum). I read a bunch of these so that I would be prepared, and summarized and read ones I felt were appropriate for Skyler.


If you have any questions, feel free to private message me. Do you know if you will be going tissue or mechanical?

I wish Ryan the best. Please keep us posted on what transpires.

 

[SB42]

Hi Lori,

This site is so humbling...thank you forn sharing....I can't imagine what is going through the mind of a 13 year old...I do know, when I recently discovered my similar situation, I was scared and thought I would be looked at as weak and I was afraid to share with anyone...I mean c'mon, a 42 year old that has always been active through athletics to include college football and I have to have open heart surgery? Trusting in God, finding this site and doing more research, I can only believe that my surgery will only make me stronger and set me up for "bigger" things in life. Encourage him to research / search on line with you and let him know there are many others like him on this site that will be happy to mentor him and answer any questions that he may have - without mom being around . My thoughts and prayers are with you and your son!

Happy New Year,

SB42

 

[hannahsmom]

Hello Lori B.

I am the mother of a young heart patient. Hannah had her 1st surgery at 4 (repair) followed by a replacement last fall, a few months shy of her 11th birthday.

When she was 4, it was so easy to tell her it would be ok, and she of course believed mommy and daddy. The 2nd surgery was more difficult. She was fully aware of what she was about to endure and had her own fears. Knowing she was scared and trying to be confident and brave for her was one of the hardest thing I ever had to do...let's just say I should have won an Oscar for my performance of a happy, care-free, confident mom during the pre and immediate post-op phase. I do feel that her father and I along with all of our family and friends maintaining a positive outlook on the whole process did help her tremendously.

As a family we decided the ross procedure would be best for her due to her age, but unfortunately once she was in surgery, her dr determined this would not be the best long term solution for Hannah, so he went with our plan b. This was to implant a mechanical valve. While this was our plan b, we never expected to have actually go to plan b. I was so upset about the fact that Hannah would need anticoagulation treatment the rest of her life. I had also had fears that ticking of the valve would drive her crazy and cause emotional distress. I was so afraid to tell her. The last thing I wanted was for her spirit to be broken. Luckily Hannah was there during our long meeting with the surgeon the day before surgery. Dr. Bove looked her in the eyes and promised to take great care of her. He also assured her that no matter what route we had to take, she would be just fine and would be able to go back to being a normal 10 year old girl. I truly believe those words stuck with her, because she handled the news amazingly well. She returned to dance and gymnastics 6 weeks post op and has been thriving ever since. She was given an adult-size valve and will hopefully never need surgery again or at least not for a very very very long time. Her anticoagulation treatment has been good so far -- knock on wood... Her INR has been within range for almost a yr now.

Overall her scar seems to the most bothersome to her...as she has gotten older. Undergarments are uncomfortable and I can tell she is self-conscious about it. I try to tell her she should be proud - it shows was a strong person she is, but she is a young girl. She just wants to be like everyone else. I assure that in time it will fade just as her first one did. I still can't complain, she is such a happy, positive kid!

In regards to preparing for surgery I found that sharing other heart patient's success stories with her was very comforting. Seeing other kids going through some of the same things she was going through made her feel a little less alone. One of her fellow dancers is diabetic. Explaining to her that little Bri gets her finger pricked too and has medicine to take too - All of these things helped her feel more "normal".

Helping your son understand what's to come and how it will benefit his health in the future is key. The more he understands, hopefully the less he will fear it.

My thoughts and prayers are with your son and the rest of your family through this trying time.

 

[Ovie]

I don't know how to follow any of the posts above, other than you have come to the right place.

I'm new to the site myself also, at the age of 25 I'm waiting for my first OHS and at first I wanted nothing to do with it, didn't want to hear about it, nothing!

As a few months past I started looking into information on the surgery (AVR) and I had been a wreck, panic attacks, stressed out easily, just not fun.

However over the last couple months I've learned so much, read people's stories of them and their loved ones surgeries.
It's made me feel much more calm and optimistic about the situation.

Now I can't imagine what it's like for you to have to watch this happen to your son, but there are people on here who can, and this site IMO is always so active, if I ask a question I have 10+ answers in a short period of time. Which is just way too cool.

From Frantic, to denial, to pure fear..knowledge is power and the more you learn about it, I think the better you will feel.

Your son will come around eventually and open up I'm sure, I was the same way.

I wish nothing but greatness to you and your family, and your son will be in my thoughts for a smoothe and safe operation.

PS- I'm always trying to find people around my age that went through what im about to go through. Have you ever thought of maybe finding someone young like your son who's had something like that done and maybe have him give some insight? I know their young but it could be helpful.

Also where are my manners, welcome to the site !