My 8 Mo. Old Has a Hole in Her heart..ASD.

My son who will be 6 in just a couple weeks was born with the ASD (atrial septal defect). His ped caught it very early and just kept an eye on it for a while. He then sent us to a ped cardio. when he was about 1. The doctor said that they usually try to wait until the child is about 40 pounds or so. But with this defect it does tend to stun their growth. The cardio had said that our son looked great, and much bigger than others typically are. It take him some time to actually get to the 40lbs but shortly after that we went to see him again. We saw him (Dr Chang) towards the end of May and he said that we could go in on the 23rd of June, so we did. He had given us the dimentions of the hole and I really felt in my gut that it would end up open heart. They took him in to the cath lab, saw the size of the hole and its placement and decided that it just would not be work, that open heart was the way to go.

They took him to the OR and used his own heart tissue to repair the hole. They later said that that was actually the best way to go, that the heart would accept it no problem, that the complication risk was next to nothing at all..ever, and a year later if you were to go inside there you would probably not even know that there was ever anything wrong with it.

He was in the PICU for 2 nights and then the inf/todd unit for 2 more nights. The doctors and nurses that worked w/us said that he was probably the fastest healer they've seen! That sure felt great!! He had the surgery monday night and by thursday night he was on tylenol and ibuprophen only. We alternated those for a week after we got home and then NOTHING!! He never complained of pain accept for when his incision was bonked or touched wrong.

When we went in for a follow up w/the cardio like the 3rd week of July he had gained 3 1/2 lbs, and grew 1/4 of an inch!!!!!!!!! He often wouldnt gain 3 1/2 lbs in a year!! They did another scan and the right side of his heart had shrunk down to almost completely normal, the blood flow was as it should be and it all just looked awesome!! The doctor was highly impressed! :)

As tough as it is to fathom the thought of your baby going into surgery (cath lab or other) you have to have 10x the amt of faith in the doctors steady hands and judgement, 10x the amt of faith in your ability to be ok, to be strong, and 10x the amt of faith in your little ones ability to pull through perfectly, to be tougher than you could imagine, and their ability to bounce back w/fierceness!

I would reccomend having a couple close people at the hospital with you, bring a portable dvd player, some snacks, and maybe a valium. I had my husband and my sister in law there w/me the whole time, my mom was there w/us until it got real late. The portable dvd player is awesome since watching a hilarious movie really does help make the time fly and doesnt allow your brain to totally focus on whats going on. Having your favorite snacks always help, rather than hoping the hospital will have something you'll like. I took a low dose valium too! I have MS so the stress affects my body like a wild, ferocious hurricane.

I wish you all the best...and feel free to contact me directly if you would like. I would be happy to help you feel a little more comfortable with it all :)

JL,

I'm with you. My daughter was also born with VSD. The hole closed by about 4 months, but at her 15 month check up the Doctor heard a murmur again. She gave us a referral to Children's Hospital in Seattle. I waited a week for them to call me, they didn't. I called them and the earliest appointment they had was August 12th, 7 weeks after her check up. So since then I've been in a holding pattern, waiting for that appointment to come.

It has not been easy, let me tell you. For the most part she's been her usual active self, but there are days where all she wants to do is cuddle and have quiet time. I'm hoping that everything will be fine, seeing as how the doc wasn't too worried, but I'm a mom I can't stop worrying completely. It didn't help that as soon as we got home I got onto WebMD.com to see what information there was. Most of what I read was not encouraging and seemed to be worst-case scenario stuff; didn't help my peace of mind at all.

Waiting not so patiently,
Melissa

I have a 12 month old with ASD. Amazingly, she tends to be the happier child of my twins. She has check-ups every 6 months now (has been every 3) that consists of an EKG and an ultrasound of her heart. It does not appear that the hole will close on its own and she will have to have surgery when she is around 4 or 5. My doctor simply stated that the decision on which surgery she'll have to undergo will depend on the size of the hole at that time. Of course, we are hoping that she will be able to have the less invasive surgery versus open heart, but we have to keep in mind that open heart is a possibility. We just enjoy watching her every day (as with my other two), and worry about it when the time comes. You can't worry about it all the time. Treat her as if there is nothing wrong and you will be able to enjoy this wonderful time much better. We have a wonderful Cardiac specialist that makes me feel much more at ease with it all. She goes to NW Childrens Heart Center. I will recommend them to anyone with a child who has a heart condition. They are great. I wish you all the luck with your daughter and pray that all goes well.
~A.

My niece had the exact same condition. Unfortunately, the hole did not close on its own. But between birth and the age of three, she was still a happy healthy little girl. She stayed smaller than average and she wasn't quite as active as other toddlers (and my sister in law looks back on THAT with regret that she didn't appreciate it more!) but she was perfectly fine in every other respect.

The open heart surgery was WAY harder on my SIL and the rest of the family. Because, let's face it, this is a frightening procedure to contemplate - especially for a child. Fortunately, my niece was a little trooper. She was in the hospital for an amazingly short time. She went home very quickly. Healed like you wouldn't believe. (The scar is barely noticable.) She began growing IMMEDIATELY and by the age of five you couldn't tell there had been anything wrong. She'll be seven this year - and she's just a perfect little girl!

Your daughter will be fine, too. I feel it in my bones! Modern medicine is a wonderful thing!

My friend's daughter had a stint/ surgery and it went well. There was so much testing that she didn't get the surgery until she was 16. Talk about worrying! There was a conference in Texas for family with children with heart issues and it was very reassuring to her as a mom. Plus, there are on-line sites of mothers with children with heart issues. Please know our thoughts are with you and I'm sure she will be fine with your love. Have hope and best wishes. My brother has degenerative kidney disease, dialysis, has gone blind and depression before age 30. He had open heart surgery and they had taken an artery from his thigh. My mom had to have them rush in to open his leg back up to keep him from internally bleeding. Make sure to ask lots of questions and stay on top of your instincts. He's ok thanks to my mom. Bug the doctors if you ever have to and it will be ok. Sorry to share but I hope it helps someone. Take care.

I have a 10 month that was sent to a ped card due to her doctor thought he heard a slight heart murmur, well indeed it was one and after talking to the heart surgeon he stated that the baby would have had to be sleep or completely silent for him to hear it, well at this point she has a soft heart murmur and also ASD her hole did not completely close all the way up so she has two little opening on the side which is the result of her blood draining into her oxygen. She has to see the cardio every year to make sure it is not getting bigger if so they will do the procedure, she will have the caterazation done on her at the age of 4 yrs old. I am really concern with all this, but all I can do is pray for my baby as well as yours, I have not had the problem with her weight gain or height, well at least he has not stated that there has been a problem so good luck with your baby.