I found out my daughter had ASD about 2 years ago. She is alomost 4 years old and is scheduled to have surgery in a couple of weeks. I having a hard time fully commiting to going through with it. I am worried about all the risks of surgery. She is so little and so healthy right now. Any advise or support would be great. Thanks
great question Concerned mom!
Dear Concerned Mom....I was in your shoes 2 years ago. My daughter, who was 6 at the time, was diagnosed through her normal well-child checkup. She had no symptoms whatsoever, so on the outside she looked like a healthy happy 6 year old. When they told me that she would have to have open heart surgery to repair the 2 holes, I was completely devastated. I really couldn't imagine going through with it either. I did not think that I had it in me to bring my daughter to the hospital and leave her life in someone else's hands. But we did it. I just knew no matter how scary the situation is - and it is VERY scary - I could never forgive myself if I didn't act on it and something happened because of that. You have to put trust in her doctors and surgeon. I'm not sure where you are in the world but where I am, we have extraordinary hospitals so I was able to put faith in the fact that they would give her the very best care. And they did. Your daughter's recovery will BLOW YOUR MIND. Once my daughter got out of her hospital bed (about 3 days), there was no stopping her. We were home after 4 days, and about 10 days later, she was back to school. She healed so well. So fast. Childrens bodies are absolutely amazing. Today she is doing incredible - nothing has really changed from before - she still seems like that same kid (only a couple years older). She had her 1 year post surgery Echo in November to see how everything was doing and everything was doing what it was supposed to. Now she will have to go every 5 years....small price to pay for her good health.
Stay Strong.....she will do fine. Keep Breathing. I felt like I couldn't breathe for about 5 days before. This support site is a great place to find answers and just general support. We've all been there. If you have any other questions, please don't hesitate. We will be thinking of you and praying for your daughter. Please keep us posted after her surgery.
Dear Concerned Mom,
I was born with an ASD, at the age of 9 I had mine sewn closed. Every year until I turned 18 I returned to the hospital where I had my surgery for follow ups. Well I am happy to say that I am turning 50 years old in May and knock on wood, I have never had any complications.
I wish you much success with your daughters surgery and I will keep her and your family in my prayers.
Hi! I was just in your shoes a few months ago! My daughter had ohs to close her ASDs in November 19th! I agree with Alyssa’s mom - the resiliency of your daughter will shock you! I was scared to death and the thought of going through it was terrifying. Our surgery was 4 hours long, she was out of icu in under 24 hours, walking in under 48 and home in 4 days asking to jump on the trampoline!!! My Husband and I were just talking last night and the time leading up to surgery was far and away the worst part. The surgery itself is definitely serious and scary, but when you look back its like it never even hsppened. i hope you can trust and feel comfortable with your surgeon and hospital. In the long run, you are making the right choice!! Where are you located? See if you have any local support groups- check out mendedlittlehearts and see if they have a local chapter to you. Hang in there- you’re in the worst of it now. Of be happy to help with any other info so please don’t hesitate to ask. Good luck to you and your daughter! She will do great and do will you!
I am sorry to hear about your daughter. My story is quite normal as I learn more about ASD. My daughter who is 13, struggled swvwely with asthma her whole life. Thos year during a regular check uo they noticed a slight murmur, suggested she get a check up with a cardiologist. We went in to thw appointment expecting everything to be ok, a week before Valentine’s ww was told she had ASD and it needed to be repapired. We was assuredthat the pprocedure was very successful in fixing the holes and often time people make it to the age of 30 before showing any symptoms. Week after finding out we went in for her to have thw hole catherized, sadly tthis was not successful and the doctor ended up finding another hole, damage to her lungs and we was told she needed to have opwn heart surgery. My heart hit the floor and I shut down, especially when the surgeons nurse begin to tell us what she would go thru day of the surgery. You can never be prepared fir your child to have to go thru something so severe, and when she learned about it she did have a had time dealing with it. We knew she had to have itdone and on 3/12/13, my daugter joined the zipper club. Amazing thing tobus was the doctor informed us that they infact found 7 holes in her heart and was able to repair them all. She is home and recovering nicely. She spent a week in ICU and she came home with only pain meds and a inhaler. Children are steonger then we are spiritually. She has great days and she has some sad days dwaling with the scar but she is going to be around for a long time and healrhy. I think its hsrder on us parents because we dont want to see our children in any pain, and thus procedure ir surgery is a major thing. Talk to your doctor, make sure th ey try the inavasive way first. It is life changing hut children bounce back much faster then adults who undergo the same thing. If you can heal her while she is young consider it a blessing. We was told that if we didnt find the hole, and she started showing symptoms at 25, she might possibly need a lung transplant are gave a heart attack. By all means do what is right for your child, just way the pros and cons. As scared as I was and worried now, glad we had it done
I apologize for my typos. Saw this on my way home and couldnt waot to get home to my computer to reply.
My son was diagnosed a few years ago as we’ll, he just had his 6 year old birthday a few weeks ago. And he just had his 6 month check up. When we found out he was going to have open heart surgery I think it was hard for us to think he would have to go through the surgery, it was the longest 4 hrs of my life. But if you prepare your self, your child, and family, it helps a lot. And you will be amazed how fast your child will recover. Our doctor told us we should expect to be at the hospital for a week cause boys usually take longer to heal because of their chest muscles, but we were only there for 3 days, he was a very strong boy! Oh and the hospital had a great “helper”,don’t remember her title but her job was to explain to the children about the surgery, distract them while they draw blood, and when it was surgery time, since we couldn’t go all the way to the OR she was there. She made my son and us comfortable. Oh and I’m not sure if every hospital is the same but we are here in Austin, Texas and we went to a children’s hospital and I looked into their website and found out that they offer tours which they let my son see where he would be and some of the things he would see which also helped so he wasn’t so nervous about going there.
You don't say whether she is having Open Heat Surgery or having it closed through a cath. with a device. I have been there twice now with 2 of my children, and I have 3 more with it and 1 of the 3 still might need hers closed in the future. I had Open Heart Surgery 27 years ago to close 2 holes. From being on both sides of the coin here I can tell you that it's scary and over whelming. But the most important thing is that you trust your daughter's doctors and the hospital where it's going to be done. When I was a teenager I suffered a grand mal seizure because of my holes and other than a doctor saying that I had a sligh murmur when I was younger there had been no signs. As we look back now though there were alot of signs. I went into the hospital the day before and after surgery I spent 48 hours in the intensive care unit and then spent a week in the hospital. I had awesome nurses and doctors. My daughter had hers closed via cath. with an amplatze device and she spent the night in the hsopital and then came home. She had to take it easy for 2 weeks and then slowly back to full activity. My son also went in the morning of his surgery and had to spend the night ( he had to stay on his back and still), his was also closed with an amplatze device via cath. He came home and was shooting hoops within 2 weeks and back to school in about 2 weeks and back to basketball practice 3 weeks after surgery. They both were easily tired for about a month or so afterwards, but I am very glad that they had theirs closed. My daughter had hers done out of state, because she was in college at the time and her surgeon and docors were in the state where she attened school. Because of financial reasons we couldn't all go (we have 7 in our family) so my husband and son went and I stayed home with the other kids. I remember the morning of the surgery I was very anxious and worried, but we went out and did something fun and it helped. My son had his done locally, and both my husband and I were there.
As for the risks; I honestly believe that the surgery out weighs the risks. She may be little and healthy right now, but what about in 5 years or 10 years? The longer the heart is enlarged and has to work over time the greater chance of permanent damge being done to both the lungs and the heart. I can attest to this as I am currently dealing with the exact issues personally.
But again you have to completely trust your daughters doctors/surgeons and the hospital. Mine and my son's were done at Children's hospitals and my daughters was done at a state of the art cardiac center. We have actually changed doctors beause we didn' feel comfortable with what the doctors were saying. We are a military family and 2 of our kids were being seen by the same cardiologist and 2 were being seen by 2 others and still 1 hadn't been seen, I didn't like what 1 of the cardiologist was saying about my daughter who was 3 at the time and therefore asked to be referred to the one te other kids were seeing.
Good luck and I'll be praying for you and your daughter. There are also a bunch of good books about kids having surgery and even heart surgery written for kids. You can also check out the american heart association.
Thank you everyone, i really appreciate it. It helps me to hear the success you have all had. Her surgery is next week, she is having it closed with a Cath. We are in California. Thanks again.
Hello, my daughter is now 8 years old. She too had the surgery at 4 years old. Ever thing went so smoothly. And we have not had one complication. She is considered to be normal, as if nothing was ever wrong.
My daughter had cath too.
concerned mom said:
Thank you everyone, i really appreciate it. It helps me to hear the success you have all had. Her surgery is next week, she is having it closed with a Cath. We are in California. Thanks again.
This is exactly our story as well. My daughter was diagnosed at 15 months and she had a fully successful closure in the cath lab at age 3 (almost exactly one year ago!). I was nervous every day for the two years between her diagnosis and her procedure. She was completely healthy - never had any outward symptoms. Her hole was measured as 6-9mm during office visit ultrasounds, but ended up being 13mm when they measured in the cath lab. Her procedure only lasted 2.5 hours. She slept the rest of that day and through the night peacefully. When she woke up the next morning she was her normal self. I agree with what the other parents have said - you will be amazed at the speed of her recovery. We spent a full week at home "resting", but by the second day my daughter was ready to be up and running around. It took some super-mommy effort to keep her "low key" as the doctors' recommended following the procedure. It's good to do the procedure while they are young - they won't remember it as a big scary thing (WAY harder on the parents than the kids!!), and their recovery is so much easier. Their little bodies are quick to heal. It's OK to be nervous. But just think of the relief you'll feel when it's all fixed and you can forget about it! Our pediatric cardiologist told us after the initial diagnosis that our daughter would have the procedure, "and then live happily ever after". And that's exactly what's happened so far! Hugs and prayers to you and your family. I hope you find peace in the coming days, and that your daughter's recovery is speedy. Take care - and definitely keep us posted.
My 6 yr old had her ASD closed via cath. It is truely amazing! I was a nervous reck and kept questioning myself "Am I doing the right thing??" she had never shown any symptoms and the cardiologist told us to treat her like any other child. She played soccer, skipped and was a typical 6 yr old. So why close it?? but I thought what if something happens when she is older??? So we opted to follow the advise and have the procedure done. It was done in Toronto Canada in January. The procedure took approximately 1 1/2 hrs. I was able to bring her into the room and stay until she "feel asleep" before we knew it the cardiolgist told us we could go see her. She was pretty alert and asking when she could go to the gift shop! We left the hospital within 4 hrs and she was great! great appetite and ready to play. We had to keep reminding her to do some quiet activities as they suggested for the first week. After that she was back to running and skipping. She is doing fantastic. No problems at her follow up visit. Hope this eases your mind a bit :)
Concerned mom. You are not alone. My ASD was randomly found in Dec 2009 at the age of 33. I had it repaired in May 2010 via robotic open heart surgery and have run two marathons since then. Next month will mark my three anniversary. I
http://health.clevelandclinic.org/2013/01/running-a-marathon-after-heart-surgery/
Your daughter will bounce back quickly from the procedure. The human body is an amazing machine. Please keep us posted and let us know how we can help. We will be thinking about you, your daughter and your family.
Thanks again everyone. I am happy to have found this site.
my daughter had open heart at age 15 in October. She is now playing basketball and running track in high school. I thank God that is was found and fixed before something devasting could have happened to her. Praying your little one is fine. It is not easy watching your child go through a four hour surgery but well worth it! her ASD was 1.9 cm, tried cath lab device but it didn't work as hole was too big.