Decisions, decisions... asd, and pda repair

[cheyanne12]

Hello...

It's been awhile since I've posted anything online. Noah, who is now three, is active and the light of our lives. Noah has down syndrome, coloboma (iris and retina in the right eye), and two holes ASD (7 mm) and PDA. We were told at birth Noah's holes would close up, but that hasn't happened so this week we recieved a call from the pediatric cardiologist telling us we have two options... open heart surgery or using a coil and another umbrella device to close up the holes going through his vein. With the devices, there would be less complications since you wouldn't be opening up his chest and stopping his heart but their could be leakage even after the devices are put in place. With the open heart surgery the holes would be stitched shut and that would be the end of that... however this also means putting him on a ventilator and the stay in the hospital would be longer, plus he'd have a scar on his chest for life.

I guess I'm wondering about the long term effects on Noah's life using the devices. I'm also wondering if I can connect with families who have gone down this road and have had to make this choice.

We greatly appreciate feedback.

Sincerely,

Suzanne
Wife to David,
Mommy to Savannah (19), Curtis (18), Brandon (16), Nathan (14) and our adopted Noah with ds (3)

[dannysmom]

Hi,

My son is almost 2 and had his heart repaired via open heart surgery at 8 weeks old. While we didn't have a choice, I can tell you the experience of surgery was very different from what I envisioned it to be. Now, you have options....so you have consider the risks. For us, we had no choice....but I can tell you of our experience.

We were in the hospital 5 days. He was in actual surgery about 4 hours. His was on the bypass machine 44 minutes I believe. He was on the ventilator for 1 day post op. We stepped down to a regular room 2 days post op....3 more days there...and discharged on day 5. He has a tiny residual mitral valve leak which should cause him no problems. He is on no medication. I have been told our experience was the best case scenario....but even with minor complications, most kids bounce back very quickly.

I can't lie, it was VERY difficult to go through and if I had a choice of closed heart versus open heart...you bet I would have picked the closed heart surgery. But, just in case you decide on open heart, I figured I would share our story.

Feel free to ask any questions, I am more than happy to share any details of our experience.

[cheyanne12]

www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/asd.htm

I found this site to be a bit helpful, but it still says the devices are experimental.

[cheyanne12]

I found another mother whose daughter had catheterization for her ASD, she was in the hospital one day, but her daughter had to take aspirin for 6 months afterward. She expressed she was concerned about her daughter's stomach and Reye's syndrome, but her daughter had no problems. She told me took a leap of faith and chose this cathetization over open heart surgery thinking that she could always go back and have these devices removed and get open heart surgery at a later date. The only thing I can think is that this can buy time for science technology to advance even with open heart surgery. I'm still up and down about the decision. It seems as though my three year old son has an angel named Bella. Today he told me Bella is sad. He first pointed out Bella in the hospital emergancy room when he had croup and couldn't breathe, then he pointed again to a blank wall in the cardiologists office. One day he pointed to a nursery rhyme book to a woman wearing a long gown and white apron and he said "Bella, Bella... pointing to this woman."