Needing advice/support.

[bentleysmama]

So I'm here as a concerned mother... My 6 yo son.. Bentley... Is about to have a Ross procedure done. I've known he's had aortic valve stenosis since he was 2 weeks old... It was always in the moderate almost severe stage until he was about 3 and a half. He had his first procedure, an aortic catheterization, when he was 4(2022). We had a 50/50 chance of it tearing his valve and causing regurgitation aka being leaky. Well now it's 2 years later and they're wanting to send us back to Seattle for a Ross procedure. I understand what is going to happen, but I'm a very scared mother seeking support and or advice on what this is going to look like. I was scared when they first heard his murmer. I was scared when we had to see the cardiologist the first time. I was scared when we warned about surgery. I was scared when they told us they wanted to do the surgery. I was scared making the appointment and sending my youngest child into something he didn't understand, but I'm terrified now. I have a month and a half before the procedure takes place, which we have to drive 10 hours and spend a few weeks in a place aren't familiar with. Bentley knows he is having another surgery, but I don't think he actually grasps the seriousness of it. I would just like to hear from anyone who is willing to discuss this procedure with me from the participant point of view. My son is amazing, a little rambunctious as all 6 year old boys are... But I just want to maybe understand what my baby is up against.. and hopefully not be as scared for him. Any input is greatly appreciated.. thank you

 

[pellicle]

Hi

I can only imagine what you're going through. I wrote this post here some time back, basically as a way of saying "it'll be fine" and "salute to my mum"

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/post-786328

I'm pretty sure that your little boy will go on to have more surgeries (as did I) and with strength and guidance may go on to excel in life beyond expectations.

Have faith in the medical system, for its well justified; having helped tens of thousands of children just like your boy (and just like me) get to the ripe age of 60. Its well honed and has been undergoing iterative improvement for well over 50 years now. I had my surgeries at about 10, then 28 then 48 ... so many were worried I would die, but yet the reality is that so many of my friends and family have died and I'm still fit and healthy.

Life is never what we imagine it will be, so make sure you don't make that suffering up for yourself. Take it one step at a time, don't assume anything; react only to facts and outcomes.

Best Wishes

 

[pellicle]

PS

But I just want to maybe understand what my baby is up against.

my recollection was that it was a bit of an adventure and I was tired ... it was worse as an adult. In all situations I believe my mum suffered more than I did (except my OHS at 48, because mum was already passed on then)

 

[3mm]

But I just want to maybe understand what my baby is up against

Bentley should be fine. I have great confidence in the surgeons and their teams of doctors, nurses, and technicians. They care about everyone, but they care double about children!

Which hospital will perform Bentley's surgery? Perhaps you can ask the hospital to send you some photos of their cardiac unit. It can be reassuring to see a typical room layout, family room, etc.

I will pray for Bentley, your family, and for you.

 

[Croooser]

Well...

Sounds like there is no question that the surgery is required - so no real decision to be made?

If I have that right, then you look at potential outcomes based largely on past results in similar cases. Here is one relevant report that suggests that positive outcomes are highly likely:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8339620/

IMO, No way that you will avoid the anxiety that this situation will bring. However, like all of the rest of us on this forum, the odds are very, very good that he will experience a positive outcome.

Wishing Bentley a successful surgery, a rapid and complete recovery and a long and happy life extended with his amazing modern medical surgery.

 

[tommyboy14]

Given his age, he doesnt have many other options other than the Ross procedure. The Ross valve is the only one that will grow with him. Any other option will not may restrict his heart development at some stage. The Ross valve (I.e. the pulmonary autograft) will grow with him. That is a huge advantage at this age. He will have a normal child hood.

But the Ross does create a two valve disease.

The way you need to look at this is that the Ross will be a bridge to something else at this stage. Ideally, the Ross lasts until he 18 or older. He will then need another replacement with a mechanical valve, which should last him for the rest of his life. Of course, he will need multiple pulmonary valve replacements throughout his life.

The ideal bridge until he can have a mechanical valve would be a valve repair. Have you asked the doctors about that?

 

[Buck83]

As a parent and a recipient of heart surgery, I can only offer my support. If my child was going through this I would be in a very similar headspace. But after going through a surgery similar to what Bentley is facing I can say, modern medicine is amazing and what these cardiothoracic surgeons can do is the stuff miracles are made of! I am praying for him and you and in light of the amazing capabilities of today’s doctors and medical practices, I trust prayer and God’s plan more than anything! The combination of all of that is the best way to find solace! Please keep us updated and I will keep all of you in my prayers!

 

[Lynn]

I can relate to your anxiety. My daughter (step daughter so no genetic connection but has always lived with us) required heart surgery at age 5 and reading your post makes me remember the anxiety like it was yesterday. She will turn 29 this year, so it’s been a while. Her procedure was not the same as your sons, she required mitral valve repair, a hole had to be patched and another minor repair was completed.

I can’t speak to the Ross procedure but I can speak to the anxiety and stress. The wait during surgery was a very, very long 6 hours. I remember it clearly but not fondly.

What I can say is that children do really, really well with these surgeries. They tend to recover so much faster than adults and I really hope this is the case for your son. Our daughter had surgery in early July and by Sept when grade one started she was good to go. She is the youngest of 5 and the problem was holding her back for the first 6 weeks to give her sternum time to heal. She wanted to do everything her brothers and sister were doing.

I will warn you that seeing your child in recovery with the tubs and paraphernalia is tough. Try not to let it get to you, it’s only a couple of days before most of that is gone. We tried as much as possible to make it an “adventure” for her. Took her out for dinner and explored the city the couple of days before surgery. Stayed in a nice hotel. She still talks about the phone in The bathroom lol. She remembers little if surgery though, which is good.

keep in mind that this was close to 25 years ago, and kids do even better today than they did then. She has noonans syndrome (cousin of Turner’s syndrome) so still has a few health challenges, but her valve repair is still holding, she may require another valve surgery one day but even that is not certain.

It’s so much harder to watch your child go through this than it is to go through this yourself. But when it’s necessary you just have to make the best of it, stay positive for your child and remind yourself how quickly kids heal.

Wishing you and Bentley the very best!

 

[Rebecca]

One great thing being a boy he will be able to father his own children. I know a 13 teen year old that had 3 open heart surgeries before the age of three. I first meet her when she was 5 months old and not thriving. She was under two year with mechanical valve and on Coumadin. Around 12 she had outgrown her valve and needed a larger mechanical valve. She did have complications and also got a pace maker. With the serious of heart disease she lives a normal life. She is small for her age. Your son should be fine.

 

[TGM]

So I'm here as a concerned mother... My 6 yo son.. Bentley... Is about to have a Ross procedure done. I've known he's had aortic valve stenosis since he was 2 weeks old... It was always in the moderate almost severe stage until he was about 3 and a half. He had his first procedure, an aortic catheterization, when he was 4(2022). We had a 50/50 chance of it tearing his valve and causing regurgitation aka being leaky. Well now it's 2 years later and they're wanting to send us back to Seattle for a Ross procedure. I understand what is going to happen, but I'm a very scared mother seeking support and or advice on what this is going to look like. I was scared when they first heard his murmer. I was scared when we had to see the cardiologist the first time. I was scared when we warned about surgery. I was scared when they told us they wanted to do the surgery. I was scared making the appointment and sending my youngest child into something he didn't understand, but I'm terrified now. I have a month and a half before the procedure takes place, which we have to drive 10 hours and spend a few weeks in a place aren't familiar with. Bentley knows he is having another surgery, but I don't think he actually grasps the seriousness of it. I would just like to hear from anyone who is willing to discuss this procedure with me from the participant point of view. My son is amazing, a little rambunctious as all 6 year old boys are... But I just want to maybe understand what my baby is up against.. and hopefully not be as scared for him. Any input is greatly appreciated.. thank you

Hello bentleysmama,
I’m a fellow Heart Mom who has been exactly where you are more times than I ever thought. My 21 year old son was born with AV Canal Defect and Pulmonary Valve Stenosis. He has endured 4 OHS at ages 10 months, 4 years, 7 years, and 15 years. To be honest, it is HARD!! As the parent, you will need to act as if it’s “no big deal” in front of your son. Do your crying, fretting, and venting away from your son. If he feels that you are calm and confident, he will follow your lead. I suggest you go in for the pre-surgical tour and speak to the Child Life Specialist at the hospital to get some suggestions on preparing your son and yourself for the surgery. You should plan to stay with him in the hospital, if it’s possible. He will need lots of attention during his recovery. For your own sanity, take breaks when you can to take a walk, call a friend, or grab a coffee. It’s super stressful to watch your child go through pain and you’ll need some methods for coping. As this is your son’s first OHS, he will likely recover pretty quickly and have you taking him to the playroom a few days after surgery. I hope that will be the case. Best Wishes!!

 

[TGM]

I can relate to your anxiety. My daughter (step daughter so no genetic connection but has always lived with us) required heart surgery at age 5 and reading your post makes me remember the anxiety like it was yesterday. She will turn 29 this year, so it’s been a while. Her procedure was not the same as your sons, she required mitral valve repair, a hole had to be patched and another minor repair was completed.

I can’t speak to the Ross procedure but I can speak to the anxiety and stress. The wait during surgery was a very, very long 6 hours. I remember it clearly but not fondly.

What I can say is that children do really, really well with these surgeries. They tend to recover so much faster than adults and I really hope this is the case for your son. Our daughter had surgery in early July and by Sept when grade one started she was good to go. She is the youngest of 5 and the problem was holding her back for the first 6 weeks to give her sternum time to heal. She wanted to do everything her brothers and sister were doing.

I will warn you that seeing your child in recovery with the tubs and paraphernalia is tough. Try not to let it get to you, it’s only a couple of days before most of that is gone. We tried as much as possible to make it an “adventure” for her. Took her out for dinner and explored the city the couple of days before surgery. Stayed in a nice hotel. She still talks about the phone in The bathroom lol. She remembers little if surgery though, which is good.

keep in mind that this was close to 25 years ago, and kids do even better today than they did then. She has noonans syndrome (cousin of Turner’s syndrome) so still has a few health challenges, but her valve repair is still holding, she may require another valve surgery one day but even that is not certain.

It’s so much harder to watch your child go through this than it is to go through this yourself. But when it’s necessary you just have to make the best of it, stay positive for your child and remind yourself how quickly kids heal.

Wishing you and Bentley the very best!

Just wanted to say hello. My son also has Noonan Syndrome. He’s a 21 year old with AV Canal and pulmonary valve stenosis.

 

[Lynn]

Thank you for sharing TGM, we haven’t meet any other families dealing with this, it’s not very common. Our daughter had pulmonary stenosis that was repaired at 5. She is still follow every couple of years by a cardiologist and may need future surgery. Noonans presents with such a varied degree of symptoms, I hope your son is otherwise healthy.