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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

I’m freaking out

My daughter was diagnosed 2 days ago with ASD and of course I cannot find peace since then
We went because she had a regular cough and we ended with this diagnosis
I need support from other parents on my same situation
I need prayers
The cardiologist said she will need to have an open heart surgery that’s pretty scary for me
Please I need support

Hi Girlymed. Try not to freak out. I know it’s scary, but try to find solace in the fact that it IS fixable. Always remember that! How old is your daughter? I do not have children, but I had my ASD closed (via device) one year ago.

Hi,be strong. I am 37 years old and I have ASD robotic surgery for my daughter to have a healthy mother. the surgery should be done if the doctor says because it is more difficult later. your daughter will be fine! if I can help you with something, please say

She’s is 3 almost 4

i am sorry to hear. Your daughter sounds like my son. Cough since newborn and at his 4 month check up, we were referred to cardiologist. Found he has a large ASD and pulmonary hypertension. He is 11 months now. It hasn’t closed. Cardiologist is recommending OHS sooner rather than later and so, we are beginning that process including a catheter exam prior to OHS. Just to check out if there are other complications besides just his large hole. We can go through this together. I will let you know how our journey goes. I am having rough time dealing as well.

Thank you so much
Just your support helps me a lot
And prayers

Girlymed and tono, I wish you both the best. I am confident your children will be fine! What I do suggest, if you haven’t already, is searching Facebook for “atrial septal defect” and then narrowing down to the groups. There are a few available, a couple specifically for children, and there are many people there who can relate and/or answer questions for you.

now almost 4 next month
I barely found out dec 12 and since then I feel that I’m in a black out
We have an appointment on the 22nd with the cardiologist and will see

Thank you. I just searched on FB and joined 2. I hope to find more from others.

Thank you all so much

Hello, I’m a practioner and a patient. I promise it’s better to find it out now than my age!! You’ll be fine as long you have a good team ;)!! Baby will be amazing.

I’m in Houston so we are going to Texas children’s hospital

Have you met with th surgeon

I’ll keep you in touch

Hello, I am new to this forum but appreciate the vehicle for sharing. As a parent, I understand the un-settling concern, the un-certainty & the hurt you are feeling for your child. I had ASD closure myself 3 months ago & I can tell you that I had a lot of anxiety about whether to do the operation or not. Being 67 years old and having had a pretty full life, was wondering if it was worth the risk or not. What sealed the deal was the cardiologist told me I had suffered damage to my heart over time and there was real possibility for that to continue until the damage was irreparable. So he recommended closure. To keep a long story short; though it’s only been 3 months, am feeling better overall, have more energy and confident for the future.

I live in southern Virginia. I was blessed to have locally a superb cardiologist, DR David Adler and one of the top rated heart hospitals, Norfolk General Heart Hospital.

The limited advice I can offer is stack the deck in your favor: 1. find the best Heart Hospital, even if you have to travel. 2. find the best, most experienced interventional cardiologist, preferably a pediatric cardiologist specialist that has done numerous ASD closures and is associated with that hospital. Really important to feel confident in the surgeon and the surgical facility.

It’s pretty amazing what can be done these days with the technology & the skills that good surgeons and medical facilities have available. Get the right team together and your daughter will be stronger, healthier and have a wonderful life ahead of her.

Please let us know how things go.

All the best, JJ

Girlymed, how did the cardiology appointment go?

We’re thinking of you.

Seenie

Hi
Thanks for asking
She has a 20 mm hole ,but the cardiologist said that since my daughter is
asymptomatic he wants to wait for a year to repeat the echocardiogram and
then he is going to try to close it by catheter
So I’ll keep praying so the hole closes on its own
I feel better after the appointment

That sounds so much more hopeful than it did! I’m relieved for you: now you can relax and enjoy a bit of a holiday with your little tyke.

One of the things people find helpful here is the ability to just “let it out”, knowing that people will understand, and not judge you. That’s why we’re all here!

Thanks for letting us know that things don’t seem so grim now.

All the best to you

Seenie from Moderator Support

That is great news! Asymptomatic is good. My son isn’t asymptomatic and has to start lasix for his cough and pulmonary hypertension. It has helped a little but he is still coughing up all the fluids from his strained lungs.

I’m sorry to hear that ,but the good thing is that defect is fixable!!
God bless you and your little one
Merry Christmas :christmas_tree: