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Living With Congenital Heart Defects by Ben's Friends

ASD/Septal Defects - Aortic and Vessel Defects - Single Ventricle Defects - Tetrology of Fallot - Transposition of the Great Arteries - Valve Defects

Living With Congenital Heart Defects

My 2 yr old recently diagnosed with ASD

Hello everyone. I am new here and I guess any emptional support or information would be very helpful. I have a 2 yr old son who was recently diagnosed with ASD. This came as a shock to us since we were initially told (when he was 6 months old) that his heart murmur was because he had Mild Pulmonary Stenosis and that he would eventually outgrow it and no interventions are needed. Just last week, he went for a follow up with his cardiologist and we were told that he has ASD and that he would need an open heart surgery. The doctor said it is congenital but they just missed to see the “hole” on the previous 2d echo. The cardiologist said that the surgery is not urgent and we are planning to schedule it next year. I am trying to be strong but. I also find myself crying every night while I look at my sleeping baby. Has anyone had the same experience as this? Please let me know how it went for your little ones after the operation and how you dealt with it. Thank you.

Mumma, welcome to our community. The people here are very nice, but it may take a bit of time to get a response. The reason for this is a good, and very happy one: a large proportion of the people who join up here disappear and forget about the support community because after they’ve had surgery, they are well and carry on with their lives. That’s a great thing, but it doesn’t help you, does it?

Have you tried using the search feature, to the left of your avatar (upper right?) You never know what you will find if you search for “two year old” or “two yr old” or “2 yr old”. (The quotations marks will help target your search.) If you post on an old thread, any currently active members will receive a notification of your post.

All the best to you. We’re glad that you found us and we hope that you will be too.

Seenie from Moderator Support

Hello Mumma, Our daughter had open heart surgery for an ASD and other problems about 17 years ago. Long story…they were going to do it when she was four, but put it off because it was so complicated. After she grew up and became pregnant, her heart enlarged. So, she had the surgery at age 28. Procedures had improved by then. Surprisingly, I was diagnosed last year with an ASD that had become enlarged enough to need surgery, even at my age, 71. They were able to do mine with a catherization, so no open heart…quicker recovery. I recommend getting more than one opinion about your child’s problem. A heart cath is much less invasive than open heart surgery. It’s new and not all surgeons can do it that way. Our daughter had a pediatric cardiology surgeon do hers, even though she was an adult. He said her adult size made it very easy for him. She’s been fine and has had another child with no problems. She feels better and 2nd pregnancy was easier than the first one before her surgery. Best of luck and don’t worry. Today’s medical advances are wonderful.

Hi Gail. Thank you so much for your response. I am happy that you and daughter are now doing well. I just wanr to clarify, did your daughter have an open heart surgery when she was four? And yes, we are looking into getting a second opinion about his condition.

I personally think you should push surgery sooner. And pulmonary stenosis can lead to pah. So these are not small issues that you " grow out of"… are you at a children’s heart hospital?

Hello dear!! last year I 've faced the same situation…my 15 months old son has undergone open heart surgery.It went fine, now he is a 2 year old healthy n very active boy…so don’t worry, everything will be fine.

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There is no children’s hospital in our city but it was a pediatric cardiologist who saw us to explain the diagnosis. We havent talked to the surgeon yet because the plan is to have my little boy reassessed in 8 months and plan for surgery afterwards.

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Hi Sheril. I am so happy for you and your little boy. Did he go for open heart surgery too? And also if you dont mind, do you know the size of the “hole” in his heart? My son has a 10mm hole. He is also veey little for his age and I noticed that he is not as active as the other kids his age. How was your little one before he had the surgery?

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We expected our daughter to have open heart surgery at age four, but during the angiogram they determined that her heart defect involved too much lung tissue and decided not to do any surgery. Her oxygen level was reduced through much of her life. For instance, she was tall and wanted to play basketball in high school. But, running down the court even once was too tiring and she could not do it. I always asked how it would affect her during a pregnancy and they always said we’d have to wait and see. Turned out that it did stress her heart, and when our granddaughter was one year old, they did open heart surgery for our daughter at age 28. Four years later she was pregnant again and had a very easy pregnancy and delivery that time because her oxygen was better. In my case, I was low on oxygen for two years and seeing a lung specialist who put me on oxygen, but it did not help. They told me I had asthma and mild COPD. I did not! A cardiologist found the problem, and I feel great now and my oxygen level is usually in the high 90’s … very different from before my cath. They put in something called an amplatzer “plug.” Mine was done by Dr. Padgett at Riverside Sacred Heart Hospital in Springfield, Oregon. Cardiologist who found my problem was Dr. Gundry of Oregon Cardiology. Love that man! Here is a link to a video about it: https://www.youtube.com/watch?v=I5sRAcOVGiU Peace & Blessings, Gail

Thank you, Gail! This has helped me a lot! Take care!

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Yes dear he went for OHS, but the surgery was done through minimally invasive technique.Instead of front approach the surgeons had done the operation from the side.So there is no scar on the chest.It was possible in his case because of the location of the defect.
The size of ASD in my son was 10mm when diagnosed at 7 months of age.In the checkup at one year old it has grown to 20mm.
The operation was done at Amritha Institute of Medical Sciences,Kochi, India.
It took around 4 hrs for surgery.After surgery he was in NICU for three days.Total 10 days stay at the hospital.After 3 days he came back to the hospital room with me and started a normal life…Appetite was little less initially but slowly took over.Overall i will say that it was a big relief.I still remember not sleeping at night, and watching and crying for my baby as the doctors has told us that with fever his heartbeat will rise and he is suspectible to respiratory infection

Before surgery he was fine.There were no symptoms for his defect.I accidentaly got it diagnosed when he was 7 months old and catched fever leading to increase in his heart rate.He was good for his age, but weight was less…Also while feeding his forehead becomes all sweaty.After surgery sweating has stopped…He is still not chubby but super active

Glad to know your little one is doing good. How long did it take for him to back to his “normal self” after the surgery?

He became normal once he is discharged from NICU…I will say he became fully normal within 15 days…i took a 4 hr flight after 15 days to go back to my workplace with my boy

Within a year there will be, and it sounds like it will be very well staffed with top notch pediatric cardiology experts!

Seenie

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Hi Seenie! Are we both in the same city?

LOL, no we’re not, but we are in the same country. I was surprised when you said that there was no children’s hospital in Saskatoon. When I googled, I saw the new hospital that will be ready next year. Wow, that looks wonderful. From there I found the pediatric cardiologist story. She sounds like the kind of doctor every parent would love to have for their child.

All the best to you, eh?

Seenie

Thank you!:slight_smile:

My son has a 23 mm ASD and due to the size, he isn’t tolerating his condition well and will need surgery ASAP - so it’s scheduled for Feb when he will be only 13 months old. He has been taking Lasix to reduce the congestion in his lungs caused by his overworked heart and will have to continue to take Lasix as well as a pulmonary pressure medicine after surgery. This is not a common ASD case - most infants can wait until 3 and even 6 years old, or OLDER (as some don’t even know until much older) to close and have all the issues reverse and correct itself. Your son sounds like he will be just fine if he has held up to 2 years old, and can wait until next year even - and not on any medicine for it now - and probably they will just close, and take surgery related medicine for 2 months, and be a healthy heart kid! I know it’s hard not to look up stuff and be scared - also the way you found out is very hard, the shock value sucks. My son is already having to take medicine, has a 23 mm hole, and do his surgery ASAP, but he will recover and be fine - so will yours. Maybe with time, your son’s will close up a bit, or develop good rim to allow for a less invasive intervention - close via cath. I wish we had that option - closing by cath.

Hi tono. The area of the hole in my son’s heart makes it difficult to close it through catheterization but I am still praying and hoping that a less invasive procedure would be an option. He will be scheduled for another 2d echo in September. I will be praying for your little one and will be thinking of him and your family too. He will be ok. Our babies will be ok. Thank you for sharing and for taking the time to reply to thia thread.