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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

Heartbroken. When will it end?

Yesterday, my 13 month old daughter had a echo to check that she didn’t have an ASD like me. After numerous cardiac consultants telling me she has NO murmur, NO symptoms ie bad feeding, underweight ect, they told me yesterday, after me kicking off and pushing for this Echo, that she does, infact, have a large ASD. Exactly the same place as mine was. Just as big. There’s no rim to attach a device too, again like me, and the only option is open heart surgery. She is 13 months old! She is the reason I’m alive today and the reason that I went ahead with my open heart surgery, to watch her grow up. Now I’m scared I won’t see her grow up. What if it goes wrong? Mine went so well (aside from suffering with dresslers syndrome), what what if this doesn’t go so well, what if I loose my baby? I’m just venting. I don’t expect sympathy or encouragement. I just blame myself, because ultimately this is my fault. If I didn’t have an ASD, she probably wouldn’t either. She would be living a happy life, instead of going through a major operation… Poor thing. My poor baby. What are the chances. I’m just genuinely am unlucky person. Everything that could go wrong has, this is not what I expected. I thought ASD’s were out of my life forever, now my little girl is having to suffer.

Hi Freya!

I am sorry about your little girl, but it is not your fault! Do not blame yourself.

All you can do is be there for your daughter and give her all the love and cuddles she could ever wish for.

I really hope things go well for you and your baby!

Hi
I am 34 years old who had a large ASD all my life without even having any problem. I didn’t even know about it until last Thanksgiving. My ASD was very large 1 cm with no tissue around it to attach the device. My only option was open heart surgery.
Very randomly I found this doctor who was sure he has the ability to close my ASD in cath lab.
I had my closure done 3 months ago, and now I’m back to full activity and experience.
I’m sure your little girl would be fine and doctors would find the best way for her.
Be strong and don’t blame yourself.
All would be fine.
Keep us updated please :sparkling_heart:

Freyahelen, I’m so sorry that you found yourself with your daughter in this position. It’s not your fault, and I hope that you are feeling a bit more optimistic these days.

Do you have a treatment plan yet? Let’s hope that she continues to be well until things get sorted out.

Please let us know how you two are doing.

Seenie from Moderator Support