2 year old with ASD

It was just confirmed this week my 2 year old daughter has ASD. Her cardiologist made it seem like this defect is very common, which i am slowly learning. She wants to wait 6 months before proceeding with any kind of procedure. Is there any advice anyone is offering to keep me sane for the next 6 months? Anything I should be looking for (health wise) during this time? The part that makes me so nervous is WHY is there any waiting period at all? I plan on contacting the dr again to ask these questions but the more i can find out beforehand the more comfortable i'll feel discussing it with her. I appreciate any advice i can get.

Hi, Haley’s mom - Good morning. I just read about Haley’s condition i’m glad to hear that they caught this at a very early age. I didn’t find out about mine until I was 33 and had the procedure taken care of a month after (June 15, 2011). I think the one thing to understand is that having an ASD doesn’t mean that you’re in immediate danger. It’s not like we have a bad heart, it just means that things can happen later in life. I’m not sure about why wanting to wait 6 months. Maybe the DR. wants to explore every option that’s available and do whats best for Haley. Maybe it’s better to wait for her to be a little bit older? I’m not a DR and so i’m not sure what the thinking behind that is, but i’m sure there’s a good reason for it. I know it must be diffucult for you as a mother and you want to remedy this quickly and make sure your daughter is OK.

Good luck with everything. Haley will be just fine and she will live a long happy normal life :slight_smile:

Please keep us updated!

–Danny

ASD is not a life threatening problem for a child unless it's severe, and most of those have OTHER heart defects that make it worse. Mine WAS severe, and I still lived a fairly normal life and only had to have it repaired at age 39. It's much EASIER to fix at a young age, and it prevents damage that can cause problems later in life, but the damage caused by an ASD is not sudden. In my case, I wish it HAD been fixed younger, but my experience tells me that you don't need to be terrified for these six months. Her heart is not ballooning or about to burst or anything drastic like that, and the shunt reversal is extremely unlikely to happen at a young age. If she were 18, they'd be pushing to do it within a couple months. If it's a "normal" ASD, I would personally be VERY comfortable waiting 6 months.

I hope I'm not sounding insulting or anything - I'm trying to comfort. I know as a DAD I would be more afraid than I was as a patient, but you really don't have to be terrified that the ASD is going to cause something really bad in the short term. It's just one of those slow "issues" that can cause significant trouble if left untreated.

Hi Haley's mom - though the diagnosis is crazy scary, it is really great that they found it this early in her. My thought about the doctor wanting to wait 6 months is they probably want to do another echo at that point and compare the 2 to see if there are any changes to the hole - better or worse. At her age, there is always a chance that the hole could close on it's own and if they see that happening at the 6 month check up, they may just let nature take it's course. If they don't see any change, they may decide at that point that will need to be closed via procedure. As for keeping you sane during the next 6 months, it will be hard. :( I went through it last year with my daughter - age 6 - and it will be on your mind 24 hours a day. I did a lot of research on the internet and talked a lot with her cardiologist so I knew I had all of the information that I needed to have. But I was sick with worry. In my daughters case, I found ALL of the doctors, from her pediatrician, to the cardiologist, to the surgeon to be very....sort of laid back, not urgent....but after researching everything, and learning that it is not only common but VERY treatable, I had to put my trust into them. And I'm glad I did. My daughter had surgery 4 months ago to repair her ASD's and she is doing incredible. Her recovery was absolutely amazing - they have the power of youth in their little bodies and they heal very quickly. I will be keeping Haley in my thoughts - please keep us updated. If you have any questions, please feel free to contact me here or through email ■■■■■■■■■■■■■■■.

Hi Haley's Mom!

I think we have a lot in common - are you in Long Island? I am - Suffolk County. My daughter Claire also has an ASD and she is almost 20 months now. She was diagnosed at 6 months after an episode where she turned blue. It apparantly was unrelated, but a blessing in disguise since they did a chest Xray and saw her heart was enlarged. How did they find Haley's? We go to the cardiologist every 6 months too - maybe that's why they recomended coming back? It seems like every time we go its just a standard - lets recheck in 6 months. Of course, I'm not a doctor, so maybe there are other reasons. We just actually went on Friday, and her Dr wants to do her procedure in August, after she turns 2. He said that is the optimal age to do it - between 2 and 3 - also maybe that factored into your Dr.'s opinion of waiting 6 months. Or, maybe they want to see if it changes in size at all between now and 6 months from now. I feel a bit of a wreck now that there is a tentative date for us and we have a "countdown". Did they say if they would be able to close Haley's with a helix device? That is what our dr wants to try to do - the problem is that Claire has actually 2 holes. So, they aren't sure if the device will close both. So, i think the current plan is that she will go in to be catheterized and if they can do it with the device, they will, but if not then I guess she will have to come back for open heart surgery :( I dont know. I think I'm also going to get a second opinion in the meantime. Who is your dr? Ours is Dr. Morelli and he was in Stonybrook but just reafilliated with Columbia, so that's where her surgery would be. Its pretty overwhelming isn't it? I know its common, and not life threatening, but still scary none the less. I've had numerous people tell me that if you have to have something wrong with your child, that this is what you would pick, so that is comforting. Do you have any other children?

Hang in there - i know its tough. There have been some very nice people on this board, too. I'd love to also hear what your dr told you about the closure, etc - so write back if you do have a chance.

Take care, and best of luck to you and Haley!!

Jenine

thank you so much Danny!! Since i have last posted I have read up a lot more on ASD. The first thing i did when we found out was to look and find other parents who would tell the honest truth, and thats when i found this website. Just reading other discussions filled me in a lot, then internet searching and youtube videos made everything much more understandable..And I'm sure theres still more to know. Her cardiologist thinks that there may be a change within the next 6 months but also says there hasn't been a change in over a year, so i guess it's just a wait and see kinda deal. I want to call the doctor by the end of this week to answer a couple questions and confirm a couple answers. I will definitely keep you posted!!

IM SO GLAD TO HEAR FROM YOU! AND THANK YOU SO MUCH FOR MAKING THIS A LOT EASIER!

-ALYSON aka Haley's Mom

Dannyn30 said:

Hi, Haley's mom - Good morning. I just read about Haley's condition i'm glad to hear that they caught this at a very early age. I didn't find out about mine until I was 33 and had the procedure taken care of a month after (June 15, 2011). I think the one thing to understand is that having an ASD doesn't mean that you're in immediate danger. It's not like we have a bad heart, it just means that things can happen later in life. I'm not sure about why wanting to wait 6 months. Maybe the DR. wants to explore every option that's available and do whats best for Haley. Maybe it's better to wait for her to be a little bit older? I'm not a DR and so i'm not sure what the thinking behind that is, but i'm sure there's a good reason for it. I know it must be diffucult for you as a mother and you want to remedy this quickly and make sure your daughter is OK.

Good luck with everything. Haley will be just fine and she will live a long happy normal life :)

Please keep us updated!

--Danny

Thank you for your post! No, definitely not insulted at all. As a single mother, the last thing i want to hear is that my 2 year old may need surgery or that something is wrong with her HEART (out of all places) so i guess i panicked a little before i did enough research. Since i last posted i definitely feel a little more comfortable about the situation and im beginning to understand why the dr is waiting to do anything. So thank you very much for your post and sharing your experience and I'm very glad to hear from an ASD survivor who is happy and healthy!! <3

bernardshuford said:

ASD is not a life threatening problem for a child unless it's severe, and most of those have OTHER heart defects that make it worse. Mine WAS severe, and I still lived a fairly normal life and only had to have it repaired at age 39. It's much EASIER to fix at a young age, and it prevents damage that can cause problems later in life, but the damage caused by an ASD is not sudden. In my case, I wish it HAD been fixed younger, but my experience tells me that you don't need to be terrified for these six months. Her heart is not ballooning or about to burst or anything drastic like that, and the shunt reversal is extremely unlikely to happen at a young age. If she were 18, they'd be pushing to do it within a couple months. If it's a "normal" ASD, I would personally be VERY comfortable waiting 6 months.

I hope I'm not sounding insulting or anything - I'm trying to comfort. I know as a DAD I would be more afraid than I was as a patient, but you really don't have to be terrified that the ASD is going to cause something really bad in the short term. It's just one of those slow "issues" that can cause significant trouble if left untreated.

Hey Alyssa's mom, first off i'm so happy to hear that your daughter is doing well!! It's so good to hear from so many people and not 1 negative thing. Especially from a parent of a young child. Honestly, when i first posted and joined this website i was a mess. I knew nothing and just jumped into panic mode. Although i can't say i'm not crazy worried i feel a lot better than i did last week. I did a lot of research since then and found out that ASD is very common and it's amazing that they found it so soon. I feel like we got very lucky by determining there may be a problem so early. Give us a little more time to think, i guess. The doctor did say there was a possible chance the hole could shrink on it's own so, fingers crossed. I just figure well have a great summer and 3rd birthday and worry about it from there. ITs just crazy cause now every little thing she does I wonder about. Is she breathing too heavy? is that why she sweats a lot? I'm sure u know what i mean..

I know what you mean about the dr's being "laid back." The cardiologist never made it seem like there was an urgent issue or something had to be done right away and at the time i just heard my daughter has a "hole in her heart" and i didn't even know what to think. I really appreciate all the feedback.

Again, i am so glad to hear that your daughter had such an amazing recovery and relieved that she is doing so well. It really stinks to be going through this but its nice to be able to share with others who had aleady been through.

lets definitely keep in touch!!

-Alyson

alyssasmom said:

Hi Haley's mom - though the diagnosis is crazy scary, it is really great that they found it this early in her. My thought about the doctor wanting to wait 6 months is they probably want to do another echo at that point and compare the 2 to see if there are any changes to the hole - better or worse. At her age, there is always a chance that the hole could close on it's own and if they see that happening at the 6 month check up, they may just let nature take it's course. If they don't see any change, they may decide at that point that will need to be closed via procedure. As for keeping you sane during the next 6 months, it will be hard. :( I went through it last year with my daughter - age 6 - and it will be on your mind 24 hours a day. I did a lot of research on the internet and talked a lot with her cardiologist so I knew I had all of the information that I needed to have. But I was sick with worry. In my daughters case, I found ALL of the doctors, from her pediatrician, to the cardiologist, to the surgeon to be very....sort of laid back, not urgent....but after researching everything, and learning that it is not only common but VERY treatable, I had to put my trust into them. And I'm glad I did. My daughter had surgery 4 months ago to repair her ASD's and she is doing incredible. Her recovery was absolutely amazing - they have the power of youth in their little bodies and they heal very quickly. I will be keeping Haley in my thoughts - please keep us updated. If you have any questions, please feel free to contact me here or through email ■■■■■■■■■■■■■■■.

Hi Alyson - Everything that you said was exactly what I did - I found this site as soon as we got the diagnosis and I was a wreck! But once I researched and found out more information, I calmed down a bit - still worried, but calmer. I couldn't even talk about it in the beginning without bursting into tears. The funniest thing that you said "ITs just crazy cause now every little thing she does I wonder about. Is she breathing too heavy? is that why she sweats a lot? I'm sure u know what i mean" That is EXACTLY what I did when I first found out about it. It was last summer, so she was running up and down the beach and running and jumping in the pool and I was cringing every single time she moved. The doctors assured me there was nothing physically that she could do to make the holes larger, they would get worse as time went on if we hadn't fixed them but she couldn't do anything to make them worse.

My fingers are crossed that Haley's ASD will just close on her own, but if it doesn't, those doctors will fix her right up and she will be back to being a happy healthy little girl.

we'll keep in touch. :)

kathleen

Haley's Mom said:

Hey Alyssa's mom, first off i'm so happy to hear that your daughter is doing well!! It's so good to hear from so many people and not 1 negative thing. Especially from a parent of a young child. Honestly, when i first posted and joined this website i was a mess. I knew nothing and just jumped into panic mode. Although i can't say i'm not crazy worried i feel a lot better than i did last week. I did a lot of research since then and found out that ASD is very common and it's amazing that they found it so soon. I feel like we got very lucky by determining there may be a problem so early. Give us a little more time to think, i guess. The doctor did say there was a possible chance the hole could shrink on it's own so, fingers crossed. I just figure well have a great summer and 3rd birthday and worry about it from there. ITs just crazy cause now every little thing she does I wonder about. Is she breathing too heavy? is that why she sweats a lot? I'm sure u know what i mean..

I know what you mean about the dr's being "laid back." The cardiologist never made it seem like there was an urgent issue or something had to be done right away and at the time i just heard my daughter has a "hole in her heart" and i didn't even know what to think. I really appreciate all the feedback.

Again, i am so glad to hear that your daughter had such an amazing recovery and relieved that she is doing so well. It really stinks to be going through this but its nice to be able to share with others who had aleady been through.

lets definitely keep in touch!!

-Alyson

alyssasmom said:

Hi Haley's mom - though the diagnosis is crazy scary, it is really great that they found it this early in her. My thought about the doctor wanting to wait 6 months is they probably want to do another echo at that point and compare the 2 to see if there are any changes to the hole - better or worse. At her age, there is always a chance that the hole could close on it's own and if they see that happening at the 6 month check up, they may just let nature take it's course. If they don't see any change, they may decide at that point that will need to be closed via procedure. As for keeping you sane during the next 6 months, it will be hard. :( I went through it last year with my daughter - age 6 - and it will be on your mind 24 hours a day. I did a lot of research on the internet and talked a lot with her cardiologist so I knew I had all of the information that I needed to have. But I was sick with worry. In my daughters case, I found ALL of the doctors, from her pediatrician, to the cardiologist, to the surgeon to be very....sort of laid back, not urgent....but after researching everything, and learning that it is not only common but VERY treatable, I had to put my trust into them. And I'm glad I did. My daughter had surgery 4 months ago to repair her ASD's and she is doing incredible. Her recovery was absolutely amazing - they have the power of youth in their little bodies and they heal very quickly. I will be keeping Haley in my thoughts - please keep us updated. If you have any questions, please feel free to contact me here or through email ■■■■■■■■■■■■■■■.

Jenine,

Thank you so much for writing! We do have a lot in common!! Im on Long Island but I’m in Nassau, over in Long Beach.

Haley also had a tiny episode where her lips turned blue in daycare so they called me and I brought her to her pediatrician. Both the pediatrician and cardiologist just waved it off and also said they didn’t think it was related. The doctor heard a heart murmur which triggered us to the cardiologist and that’s where she determined the defect.

Im beginning to realize how common ASD is and I know the doctor wouldn’t say we should wait if there was any reason not to. She said we can resume all activity and just keep doing what we do every day. I just get worried every so often about her being out of breath or being too hot, or too cold, or tired. Now that we know she has ASD it’s like I’m looking for something to be wrong with her.

It is definitely over whelming. Haley is my only child and I’m a young single mother (with a lot of help). Every day I realize exactly what It takes to raise a child. IT’s not easy but it’s the most successful feeling I have ever had. The doctor definitely wants to wait to see if there are any changes before they do any procedure. You never know what could happen in 6 months.

Haley’s cardiologist is Dr. Better from Winthrop University. She already recommended another doctor to do the procedure. It would be done at NY Presbyterian – Morgan Stanly Childrens Hospital in the City. Is that the same they suggested for you? A Dr. Julie Vincent. I haven’t even spoken with dr. Vincent yet.

I am definitely hanging in there. The first couple days after hearing about ASD made me feel a lot more comfortable and I think I may have panicked a little at first hearing. Until I was able to do some research.

The doctor didn’t say much about the closure, she was more adamant about waiting until the next checkup. From what she did say was that Haley would be a great candidate and it wouldn’t consist of any major scarring and would be done with a catheter. She also said that should would want to make sure it was done before Haley started school…then I explained she’s been in daycare since she was 6 months old.

Thanks for Sharing your experiences so far with me. I really hope we can keep in touch throughout both of the procedures. Clair looks like such a cutie pie (in your profile picture) I hope you get all the answers you want and everything goes very smoothly for you as I have heard from others. Theres nothing a mother can’t handle. I’m learning this day by day!!! <3

-Alyson



ClaireBear'sMommy said:

Hi Haley's Mom!

I think we have a lot in common - are you in Long Island? I am - Suffolk County. My daughter Claire also has an ASD and she is almost 20 months now. She was diagnosed at 6 months after an episode where she turned blue. It apparantly was unrelated, but a blessing in disguise since they did a chest Xray and saw her heart was enlarged. How did they find Haley's? We go to the cardiologist every 6 months too - maybe that's why they recomended coming back? It seems like every time we go its just a standard - lets recheck in 6 months. Of course, I'm not a doctor, so maybe there are other reasons. We just actually went on Friday, and her Dr wants to do her procedure in August, after she turns 2. He said that is the optimal age to do it - between 2 and 3 - also maybe that factored into your Dr.'s opinion of waiting 6 months. Or, maybe they want to see if it changes in size at all between now and 6 months from now. I feel a bit of a wreck now that there is a tentative date for us and we have a "countdown". Did they say if they would be able to close Haley's with a helix device? That is what our dr wants to try to do - the problem is that Claire has actually 2 holes. So, they aren't sure if the device will close both. So, i think the current plan is that she will go in to be catheterized and if they can do it with the device, they will, but if not then I guess she will have to come back for open heart surgery :( I dont know. I think I'm also going to get a second opinion in the meantime. Who is your dr? Ours is Dr. Morelli and he was in Stonybrook but just reafilliated with Columbia, so that's where her surgery would be. Its pretty overwhelming isn't it? I know its common, and not life threatening, but still scary none the less. I've had numerous people tell me that if you have to have something wrong with your child, that this is what you would pick, so that is comforting. Do you have any other children?

Hang in there - i know its tough. There have been some very nice people on this board, too. I'd love to also hear what your dr told you about the closure, etc - so write back if you do have a chance.

Take care, and best of luck to you and Haley!!

Jenine

Sounds good! Yes, please keep us posted and let us know how things go with the Dr.

I’m glad that you’ve been able to find the answers to your questions. Have a great week!

–Danny

Hi Haley's Mom:

Usually, if the docotor wants you to wait, it means the defect is not very serious. And maybe she is a candidate for Cath procedure which is usually for the kid older than 3. My daughter is almost 3 years old and we have a regular check every 6 months too. When she is old enough, we may try a Cath procedure to close the hole

Lots of people don't find out until later in life that they have an ASD. It was discovered at birth for me and I had the surgery 40 something years later so don't worry about the 6 month waiting period. Best of luck - it is considered low-risk surgery so just try to relax. :)

This is very similar to our story. My daughter was diagnosed at 15 months and they told us they usually wait until between ages 3 - 4 to do repairs via catheter, which they recommended for her case (we are lucky to live in a city with a very large medical center, with several well established heart institutes - so we saw some very experienced pediatric cardiologists!). The waiting period is partially so they can monitor the heart and the size of the defect. With just one measurement they don't know if the hole is actually trying to grow closed on its own. If it shows some shrinking in ~6 months they may tell you to wait several more months to see if it's closing more. If it closes all the way - YEAH! No procedures required! And even if it just shrinks some it means you'll need a smaller repair, which is also good. They also like the kiddos to be a little older / bigger for the catheterization, since that means they'll have larger veins (i.e. easier access for the catheter). Nothing to do during the waiting period except...wait. Ugh. I was constantly on pins and needles after the diagnosis. But my daughter never showed any outward symptoms. Our cardiologists said ASD is very common, very "repairable", and is not a problem that will cause immediate harm, but rather something that slowly wears out the heart muscle over decades. My daughter had an Amplatzer device installed to close her 13 mm defect earlier this week (she's just a few weeks past her 3rd birthday). The procedure took several hours, but she tolerated everything well. Good luck with everything!

Hello I am not sure about your 6 month waiting period but I am 47 years old and have just found out about my ASD on July 17 of this year. Hope all is going well with your daughter, how do they plan on closing her hole ? I will be getting a Amplatzer device.

Hi Julia. I found out about my ASD the end of May. I was finally referred to a congenital defects doctor about six weeks later. I will see him on August 6. How did you find out about yours?

I feel very lucky in the way I found out ! I did not have the typical tell tale signs as with my blood pressure, swelling in legs, irregular heart beat. Within the past year I have been having difficulty with my Asthma, so I thought. Chest tightness/pressure, exhaustion, fatigue. I had relocated to a different town so I found to a new pulmonologist he checked my lung function, it was good. Second visit I complained again about my chest tightness, he said my breathing is O.K. then on third visit I was still complaining about my chest tightness, fatigue then he referred me to a Cardiologist. Interesting enough my EKG was fine, my Echo was fine, they called to tell me that my heart was healthy according to that. Thank God that the doctor also decided to do a heart cath and there it was ! About a half inch hole ! I am thankful that these Doctors believed in my symptoms and chose to dig a little deeper other than just brushing me off.