Sub-aortic Stenosis in small kids

[Hanah_Av]

Hi everyone,

My name is Hana, I am new here,

We live in Germany, I couldn’t find anything similar to this in German so I started googling in English. I am really happy to be here and hope to share my story.

My son is 2 years old, he was diagnosed with heart murmur at birth. The doctor have referred us to the ped cardiologist soon afterwards.

His first ultrasound was at 3months and he was officially diagnosed with Subaortic Stenosis, which was at that time light. He has had regular ultrasound check ups every 3 months and during the last one the aortic valve is lightly damaged. His Gradient is still mild (35mgH) but officially the Aortic Valve insufficiency makes it a surgery indication.

I am really worried because I am scared of open heart surgeries. Especially because Aortic Stenosis even after surgery tends to come back.

Is there anyone here who has had this heart condition or who’s kids had it?
It would mean a lot to hear from you.

Thank you so much,

All the best
Hana

 

[tommyboy14]

Hi Hana,

There is a forum in German. It is here

https://www.die-herzklappe.de/forums/index.php

Viel Glueck. Deutschland hat einige der besten Herz Chirurgen der Welt.

 

[Hanah_Av]

Hi Hana,

There is a forum in German. It is here

https://www.die-herzklappe.de/forums/index.php

Viel Glueck. Deutschland hat einige der besten Herz Chirurgen der Welt.

Vielen lieben Dank

 

[dornole]

I am sorry you are having to handle this, Hana, it sounds like a rare condition. I remember how it was scary for us when our baby girl had to have a PDA ligation which is more common. I did however type in Subaortic Stenosis into the Search bar at the upper right corner of the forum and I found some existing threads where people discussed having had surgery for this condition when they were young. You might get some good info from those and you could also try messaging those people directly. Wishing you well and I hope you find some good information here.

 

[pellicle]

Hi and welcome

I am really worried because I am scared of open heart surgeries. Especially because Aortic Stenosis even after surgery tends to come back.

I was diagnosed at 5, had my first OHS at 10 and then went on to have 2 more (28 and 48).

In the intervening years I did many things (lived in Japan, Finland; travelled extensively; met many wonderful people; did some great jobs and studied and obtained some degrees). It has so far been a very rewarding and enriching life. I continue to live it as I always have (daily life).



To me having had AS (bicuspid valve) has proven to be something which formed my character and taught me patience and resilience

I wrote this some years back

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328

I hope you find some comfort, and please be assured that despite the apparent complexity of the surgery its one of the most successful surgeries in the repertoire of complex surgery.

Best Wishes

 

[Hanah_Av]

Hi and welcome

I was diagnosed at 5, had my first OHS at 10 and then went on to have 2 more (28 and 48).

In the intervening years I did many things (lived in Japan, Finland; travelled extensively; met many wonderful people; did some great jobs and studied and obtained some degrees). It has so far been a very rewarding and enriching life. I continue to live it as I always have (daily life).



To me having had AS (bicuspid valve) has proven to be something which formed my character and taught me patience and resilience

I wrote this some years back

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328

I hope you find some comfort, and please be assured that despite the apparent complexity of the surgery its one of the most successful surgeries in the repertoire of complex surgery.

Best Wishes

 

[Hanah_Av]

Hi and welcome

I was diagnosed at 5, had my first OHS at 10 and then went on to have 2 more (28 and 48).

In the intervening years I did many things (lived in Japan, Finland; travelled extensively; met many wonderful people; did some great jobs and studied and obtained some degrees). It has so far been a very rewarding and enriching life. I continue to live it as I always have (daily life).



To me having had AS (bicuspid valve) has proven to be something which formed my character and taught me patience and resilience

I wrote this some years back

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328

I hope you find some comfort, and please be assured that despite the apparent complexity of the surgery its one of the most successful surgeries in the repertoire of complex surgery.

Best Wishes

Dear pellicle,

Your post made me cry I cannot express how thankfu I am to you for sharing your story with me.
This so much resonates and reading this I see my son one day also experiencing all of those things despite his heart condition

I am so so happy for you, may you have many more nice experiences in years to come and may you lead a wonderful life. I wish it to you as much as I would to my own son

Hi and welcome

I was diagnosed at 5, had my first OHS at 10 and then went on to have 2 more (28 and 48).

In the intervening years I did many things (lived in Japan, Finland; travelled extensively; met many wonderful people; did some great jobs and studied and obtained some degrees). It has so far been a very rewarding and enriching life. I continue to live it as I always have (daily life).



To me having had AS (bicuspid valve) has proven to be something which formed my character and taught me patience and resilience

I wrote this some years back

https://www.valvereplacement.org/threads/so-upset-my-baby-has-bav.42802/page-2#post-786328

I hope you find some comfort, and please be assured that despite the apparent complexity of the surgery its one of the most successful surgeries in the repertoire of complex surgery.

Best Wishes

 

[pellicle]

Hi Hanah

This so much resonates and reading this I see my son one day also experiencing all of those things despite his heart condition

I'm glad, I hope also that you will see that these situations influence both the child and the parent. At two years old your child will pick up only your emotions and be unable to pick up the meanings.

I didn't know (as I wrote) how scared my mother was, I knew only that she was there for me patiently. Don't get the wrong idea that her and my life was without conflict (for that is inevitable) and I now see how hard it must have been for her to allow (never gave in without a fight) to do the stupid madcap things I did as a kid (lets just say motorcross was among the tame).

No matter how she fought to "preserve and be safe" I was a boy and fought to be independent.

I can say that my concern about my genetic heritage was what pushed me in the directions of biochemistry for my career. In some ways that was a mistake but in other ways its been a great enabler of helping me through the things that happened to me after OHS 3.

What matters is not what happens in life, but how we choose to deal with it. That you are even here and asking about this stuff makes it clear that your little boy will have a caring and supportive mum. I'm sure you'll both do very well.

Best Wishes

 

[Hanah_Av]

Thank you so much for your support and kind words I will take your advice gladly
Your mom must have been very proud of you I am very much sure of that I have read your beautiful post its truly inspiring

This is the picture of my boy, we wish you too all the best keep the fingers crossed for us

 

[Gorkemhazar]

Dear pellicle,

Your post made me cry I cannot express how thankfu I am to you for sharing your story with me.
This so much resonates and reading this I see my son one day also experiencing all of those things despite his heart condition

I am so so happy for you, may you have many more nice experiences in years to come and may you lead a wonderful life. I wish it to you as much as I would to my own son

Dear Hannah

I had rheumatic fever at the age of 10. I'm 49 now. I had first ohs at the age of 27 in 2002. Surgeries, knowledge & experience are far better today. 2 days ago I went to Cleveland London clinic for my stenoic mitral valve( started to shrink) and Prof Redwood said, if I ever need a surgery one day, they would do it through the vain most probably very soon for Mitral position ( tgey do for aort already I guess). And he says continue to do your sports and all ( I have 1.7 mm mitral area, mold Aortic regurgitation). Your son will have a great and productive life believe me.

 

[carolinemc]

Hi everyone,

My name is Hana, I am new here,

We live in Germany, I couldn’t find anything similar to this in German so I started googling in English. I am really happy to be here and hope to share my story.

My son is 2 years old, he was diagnosed with heart murmur at birth. The doctor have referred us to the ped cardiologist soon afterwards.

His first ultrasound was at 3months and he was officially diagnosed with Subaortic Stenosis, which was at that time light. He has had regular ultrasound check ups every 3 months and during the last one the aortic valve is lightly damaged. His Gradient is still mild (35mgH) but officially the Aortic Valve insufficiency makes it a surgery indication.

I am really worried because I am scared of open heart surgeries. Especially because Aortic Stenosis even after surgery tends to come back.

Is there anyone here who has had this heart condition or who’s kids had it?
It would mean a lot to hear from you.

Thank you so much,

All the best
Hana

 

[carolinemc]

I was born with something similar. With the Aortic valve and murmur. I was 8 in 1973 when I had repair and they were barely working on other types of surgery, like on newborns. Years later, at 36 years old, I had a aortic valve replacment and it took the murmur away. It can always come back. But on the newborns, they have learn a lot from them to be able to treat children like your son in a more bigger way. Open Heart Surgery has come a long way from when I had it done for repair in 1973. Advances in equipment, medicine, and treatment has changed things so much for pediatric heart care. Your son has a better chance with the surgery today. So sorry I cannot be there in person, but know that we here understand your worry. And come often to rant or share your experiences. Hang in there, mom.

 

[Hanah_Av]

Dear Hannah

I had rheumatic fever at the age of 10. I'm 49 now. I had first ohs at the age of 27 in 2002. Surgeries, knowledge & experience are far better today. 2 days ago I went to Cleveland London clinic for my stenoic mitral valve( started to shrink) and Prof Redwood said, if I ever need a surgery one day, they would do it through the vain most probably very soon for Mitral position ( tgey do for aort already I guess). And he says continue to do your sports and all ( I have 1.7 mm mitral area, mold Aortic regurgitation). Your son will have a great and productive life believe me.

Thank you so much you story helps ease my pain

 

[Hanah_Av]

I was born with something similar. With the Aortic valve and murmur. I was 8 in 1973 when I had repair and they were barely working on other types of surgery, like on newborns. Years later, at 36 years old, I had a aortic valve replacment and it took the murmur away. It can always come back. But on the newborns, they have learn a lot from them to be able to treat children like your son in a more bigger way. Open Heart Surgery has come a long way from when I had it done for repair in 1973. Advances in equipment, medicine, and treatment has changed things so much for pediatric heart care. Your son has a better chance with the surgery today. So sorry I cannot be there in person, but know that we here understand your worry. And come often to rant or share your experiences. Hang in there, mom.

Thank you so much I feel all the support even if not in person I really do and I feel like there is hope.
Thank you for sharing

 

[dick0236]

Hi Hannah. I was born in 1936 with what my mother called a heart murmur, probably a bi-cuspid aortic valve. At about 7 I contracted Scarlet Fever or Rheumatic Fever. Neither of these caused me any heart problems until I reached adulthood. I had an Aortic mechanical valve implanted at age 31 in 1967 and went on to live a normal life. I am now 88+ and beginning to suffer the problems of old age....but my 57 year old valve is still going strong. Your son will benefit from many decades of knowledge gained regarding heart issues.

 

[treichert0312]

Hello Hana- my Subaortic stenosis was diagnosed early and I had ped cardiologist before 5. Saw him annually, then every 6 months as the growth progressed. The cardiologist planned to wait until I was 18 for the surgery after my growth phase, to minimize chance of recurrence. That plan did not work. I had surgery at 11. But the growth in the ventricle did not recur.
The murmur remained and the valve was later diagnosed bicuspid. Although I never noticed symptoms, every nurse & doctor that ever listened were always able to identify the murmur. Some were really surprised by that sound.
I had the valve changed to porcine valve in 2014, then got upgraded to mechanical valve in 2022.
BUT, what is more interesting for this conversation- I am active in life, bicycling a lot to stay in shape for ski season. I had played a lot of soccer up until COVID and haven’t been on the field since.
My surgical scars did get keloid so they are noticeable- it’s the zipper club that no one wants to join but not too bad once you’re in there.
Yes my mother was a trooper to help me through all that. I’m glad you are finding this information.
Tschüss!
Tom