I hope you don't mind me replying. Huge hugs being sent to you after receiving this diagnosis. I've been there myself and I know the emotional turmoil of it all.
Surgery outcomes for AVSD are very good. .. But I will say is a stressful time. I've handed my daughter over to surgeons and Dr's three times. . I've at 4 weeks old. .. again for a cardiac catheter at 4 months and then again for her Glenn surgery at 5 months. She will have another surgery in the coming years.
It was exhausting and scary. .. But Dr's do amazing things these days. My daughter is now a crazy 2 year old. I'm very blessed. There are lots of groups online. ..A heart kids parents group on Facebook that I'm sure if you joined and asked about AVSD you would get lots of responses.
I'm here if you need to chat or ask questions.
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03-01-2015 09:32 #11
03-01-2015 14:49 #12Senior Member
- Join Date
- Jul 2013
So sorry to hear your news - it sucks.
Our daughter's AVSD was quite severe. My waters broke at 29 weeks and at 29+5 she was born at a very small 980grams. She also had an esophagus that wasn't joined all the way up (which we only found out after birth), so she would have needed at least 4 operations and at her size she had a very slim chance of surviving even the first operation. So we made the incredibly hard decision not to operate and made her comfortable and she died at 2 days old.
I'd highly recommend some counselling. I don't know why we didn't do it until after she had passed away. From finding out about the defect until she was born were the hardest 10 weeks of my life. Everyone wants to tell you of someone they know and you're trying to be positive but need to prepare for how hard it will be and the possibility of a poor outcome.
Terminating is certainly an option and one we were offered repeatedly and, if I knew how bad things would be for us, an option I would have taken.
The last 2 years have been incredibly difficult. I've since gone on to have a healthy and robust baby boy (3.9kgs) who is 4 weeks old today and doing marvelously.
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04-01-2015 11:14 #13Junior Member
- Join Date
- Sep 2014
Oh Nica80, I am so incredibly sorry to hear about your daughter, what a difficult decision and time for you, I'm so sorry you had to go through all of that. Congratulations on the birth of your baby boy, I'm so happy to hear that he is healthy and I'm sure he will bring great joy to your life.
I will definitely take your advice to get some counselling. I was offered counselling a couple of days ago by my OB and I said I didn't need it, but I think I do, as you said, no matter what I decide, I need to be prepared for whatever happens, good or bad.
Thank you so much for sharing your story, I really appreciate it and I wish you and your family all the best.
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