Hello,
I'm brand new to the group. My 8 year old son was just diagnosed with secundum ASD. Still seeking a second opinion on our options since the size of the hole is medium to large.
My son knows there is a hole in his heart but I was hoping to find some resources, videos that are "kid-friendly" that explains his situation and what might have to done to fix it. Everything I see on YouTube doesn't seem right. Suggestions?
Thank you.
Melani
Hi!
Yes. Yesterday marked the two year anniversary of having my ASD repaired after only finding out about it a few weeks before. I was 31 at the time and my husband and I had already had 2 children. We now have three (our son will be one year Dec 29th - he is our little miracle... well all of our children are miracles given I had an ASD all my life but he was born after having the amplatzer). Anyway, our daughters were six and four years of age at the time and I found this vid online and we showed them this. We had to explain what was going on with me because I would be getting the repair. When they saw this angel was okay, they knew mommy would be okay. We took our daughters to get echos and showed the video again and they understood what we were looking for. They do not have ASDs and we will take our son for his echo at one year to ensure he doesn't have an PFO issues. He had an echo in utero and everything looked okay then but of course will will follow up with him at one year. This was truly a perfect vid for us. Our kids are now 8, 6, and 10 mos... I think it would be great for your son:
https://www.youtube.com/watch?v=kPfH-D2O9mA
Best,
Thank you! I appreciate your response and will take a look.
I was 15 when I was diagnosed with it. We asked the doctor for pamphlets and more information on it, as well as videos. Most of the videos you will watch will include technical words, and you would probably have to explain them to an 8 year old. I would suggest consulting the doctor who diagnosed your son and seeing if he/she has any suggestions. Make sure your son knows that everyone is born with a hole in their heart, it just usually closes, and his did not, and it’s not uncommon. My hole was a rather large one and we weren’t exactly sure what we could do. We learned about all of the types of closure methods(for me they included: mesh, metal, open heart surgery) and settled on the easiest one for me (since I still wanted to play sports) we decided on the GORE HELEX (mesh) one, this is a video which is also a link to the website with all kinds of information. I didn’t want to do the metal device because I was told it might have to be redone within years, with the mesh one it was a once and done type of thing. http://www.goremedical.com/contentTypeDetail.jsp?action=contentDetail&N=8063+8239&R=1266716798221
I hope you find this to be helpful! And good luck to the little man!
Hi Melani,
How very difficult for you. Here are couple suggestions that hopefully will be more appropriate. The Kidshealth is quite good with quizzes.
http://kidshealth.org/parent/medical/heart/asd.html
http://kidshealth.org/kid/health_problems/heart/heart_center.html?tracking=K_RelatedArticle
http://www.chfed.org.uk/how-we-help/information-service/heart-conditions/atrial-septal-defect-asd/
God bless
mads
You should check to see if your hospital has a Child Life department. I had ASD and am also a child life specialist. We work with pediatric patients to make hospitalization less scary for kids. We are developmental experts who teach kids about health care experiences in a way that is developmentally appropriate. You can reach out to them for resources, teaching and, if necessary a tour of the hospital before admission.
Best of luck to you and your son. It’s a scary time for you both.
Geri
Thanks again everyone.
Hi Melanie,
Our daughter's ASD is 16 mm and has to be repaired via open heart. I am talking to surgeon in January so I will pass on any information and tips she gives me! Good luck!