Hi Everyone,
My 6 year old was just diagnosed with ASD at her annual checkup. Its large and specialist haverecommnded open heart surgery to close it. We scheduled surgery for Spring and I am a mess! I do not know what to expect! Not sure what to tell her either. How long is recovery process? How many days in hospital? How do parents cope with day of surgery? She seems really healthy otherwise, so I am hoping for full recovery. Any words of wisdom are greatly appreciated!!!
I know the best thing you can do for your child is offer them the chance for a healthy heart at a young age. My Mom had a fifty cent piece hole through until her 30's because the technology wasn't ready for surgeries of this sort yet. She had to stay away from sports, would turn blue often, and so many other things. When it came time to have children they advised against it. She did it anyway but finally had open heart surgery. You are so fortunate that heart surgery is so advanced now. I know it is still difficult to see your child go through this but in the long run it will be the best thing. My sister and I both had undiagnosed holes in our hearts and didn't know it until our 40's and 50's. I have heart failure as a result. Just think what a wonderful bright future your child can look forward to. My mom lived a wonderful healthy life after heart surgery and was as strong as an ox! Praying for your strength and your child's speedy recovery! Take care!
I wonder the same. We are in the same boat. Our 8 year old’s surgery scheduled for Summer. The hospital told us to wait until closer to the surgery to talk to him about it. The surgeon told us 3-4 days in hospital and 3-4 weeks recovery time.
Like Stace was saying. I was in my late 40's and had open heart surgery to repair a sizable hole that was up against a torn valve. I would suggest having the surgeon help, if you can, to explain to her that when she wakes up. she will feel tired but okay. But that that there will be things attached to her and in her mouth (tracheal tube) and not to panic about those things. They will be removed pretty quickly. Nurses will help her... probably give her a heart-shaped pillow (to brace the sternum, which will be healing too) and have her do lapping walks and told to cough (to keep the lungs cleared) a few times a day while she is there.
OHS has come a long way over the last 20 years and an otherwise healthy child should be out of the hospital after a few days (I was home in 4) and that the pillow will become fast and forever friend (I still have mine). My total recovery was about 8 weeks and I gradually increased the length of my daily walks over that time.
Keep in mind that we are talking..me at 47 years...and your daughter at 6.. her recovery may be even faster.
By all means. let me know if you have any questions I can help with.
meant to also add that you will be kept updated throughout the surgery, and will likely be there when she wakes up :)
Stace said:
I know the best thing you can do for your child is offer them the chance for a healthy heart at a young age. My Mom had a fifty cent piece hole through until her 30's because the technology wasn't ready for surgeries of this sort yet. She had to stay away from sports, would turn blue often, and so many other things. When it came time to have children they advised against it. She did it anyway but finally had open heart surgery. You are so fortunate that heart surgery is so advanced now. I know it is still difficult to see your child go through this but in the long run it will be the best thing. My sister and I both had undiagnosed holes in our hearts and didn't know it until our 40's and 50's. I have heart failure as a result. Just think what a wonderful bright future your child can look forward to. My mom lived a wonderful healthy life after heart surgery and was as strong as an ox! Praying for your strength and your child's speedy recovery! Take care!
Dear Stace,
Thank you so much for sharing your story! It was so helpful and I feel much better. XO
Chromedome said:
meant to also add that you will be kept updated throughout the surgery, and will likely be there when she wakes up :)
Thanks Chromodome!!! I really appreciate your insight! I
Hi Anxiousmom,
How are you? I am a fellow Monmouth county person. I grew up on the Jersey coast but now live in London. Thanks for posting your questions and I am glad to see others have jumped in there to pass along their insight. Where is your daughter receiving her treatment etc?
My ASD was found at the age of 33 in Dec 2009 randomly during pre-screening for sinus surgery (EKG picked it up). I was an active marathon runner, triathlete, etc before. This was a shock to me but still had sinus surgery in Dec 2009 and did five months of research for my heart before opting for robotic open heart surgery in May 2010. My open heart surgery was a bit different than others because they did it robotically to get to the heart via the side of my ribs rather than going down the front. All I can say is I am grateful it was found and that I had surgery in May 2010. My body feels great and I am as active as I was before surgery. I ran a marathon six months post surgery, have run a few more since then, actively train, scuba diver etc.
Chromedome said it well about OHS coming a long way since the first surgery was performed in 1952. Your daughter will have a very speedy recovery - kids are resilient.
I know this must be scary for you and your daughter but you are not alone and you have folks here that want to help get you and her through it. Please let us know what we can do and keep us posted.
John
John said:
Hi Anxiousmom,
How are you? I am a fellow Monmouth county person. I grew up on the Jersey coast but now live in London. Thanks for posting your questions and I am glad to see others have jumped in there to pass along their insight. Where is your daughter receiving her treatment etc?
My ASD was found at the age of 33 in Dec 2009 randomly during pre-screening for sinus surgery (EKG picked it up). I was an active marathon runner, triathlete, etc before. This was a shock to me but still had sinus surgery in Dec 2009 and did five months of research for my heart before opting for robotic open heart surgery in May 2010. My open heart surgery was a bit different than others because they did it robotically to get to the heart via the side of my ribs rather than going down the front. All I can say is I am grateful it was found and that I had surgery in May 2010. My body feels great and I am as active as I was before surgery. I ran a marathon six months post surgery, have run a few more since then, actively train, scuba diver etc.
Chromedome said it well about OHS coming a long way since the first surgery was performed in 1952. Your daughter will have a very speedy recovery - kids are resilient.I know this must be scary for you and your daughter but you are not alone and you have folks here that want to help get you and her through it. Please let us know what we can do and keep us posted.
John
you for sharing. I cannot believe you did not find it until you were 33! My daughter is really healthy and active but she does get tired after exercising for long periods. We are going to CHOP for treatment. Her ASD is large and the due to its shape they are suggesting open heart to repair it. When I first heard open I heart surgery, I cried for 3days!!! but after speaking to survivors, like you I feel so much better!!! Did you have any damage from not fixing it for so long? Any side effects? Is your heart functioning like any "normal " person after surgery? It is so amazing that you were able to continue with all your activities. Thank you so much for your insight! You made my day! XO
Anxiousmom,
I understand your initial reaction but glad you have been able to speak to survivors to ease the concern. I am very lucky because I did not have any damage but I would have probably had issues in my 40s. My heart is as good as new and functioning like a "normal" person. My surgeon was amazing leading up to surgery, right before it, after it and we catch up via email regularly and meet up once a year (not for medical reasons just cause).
When are they looking to operate?
Please use your new ASD family. We want to help in anyway possible.
All the best and look forward to talking to you soon.
John
Anxiousmom-my daughter’s ASD was found when she was 1 and repaired via OHS at age 4. It was 13mm with one rim too short for any of the devices. Based on Dr. advice, we didn’t tell her until 2 days before. We met with surgeon several weeks in advance, which helped my mental state a bit. He explained that he basically creates and repairs an ASD every time he does any OH procedure to get to the other defects, so he had done the procedure thousands of times.
We spent 1/2 day at the hospital the day before the surgery for blood work, and they were fantastic about explaining everything to her…we have an amazing children’s hospital in KC. Surgery was Friday morning. It lasted less than 3 hours from when they took her back. She was only on heart/lung bypass about 10 minutes and didn’t need blood transfusion. She was pretty groggy the first 24 hours. Saturday she was mostly angry…like your child, she had no symptoms before. By Sunday, she was walking to playroom on her own and in pretty good spirits. On Monday, we went home, with only ibuprofen for pain. By Tuesday she was asking to ride her bike and play on the play set. Everyone told me that’s how it would be, but I didn’t believe it. She was back on full activity after 6-8 weeks and check ups have shown her heart is healed and back to normal size.
One thing to consider is they asked if we wanted her to have something to relax her before the surgery. I don’t like to take unnecessary meds but decided to do it. She was very calm and sleepy when they took her, which is how I was able to not break down until after I was out of her sight. If she’d been upset, it would’ve been harder to keep it together. She understands now that her heart had a boo boo and the surgery was necessary to fix it, but she still worries some. Her scar is one thin white line down her chest and doesn’t bother her at all. Other kids at this age at least think it’s cool.
Having been through it, I don’t know that there’s anything I can say to put your mind at ease, but I just took the approach that we were very lucky it was found and could be fixed. From reading this site, I know that adults have a much harder time than the kids do. Please reach out to me if you have any questions at all. I’ll think healing thoughts for your little one.
kcmom said:
Anxiousmom-my daughter's ASD was found when she was 1 and repaired via OHS at age 4. It was 13mm with one rim too short for any of the devices. Based on Dr. advice, we didn't tell her until 2 days before. We met with surgeon several weeks in advance, which helped my mental state a bit. He explained that he basically creates and repairs an ASD every time he does any OH procedure to get to the other defects, so he had done the procedure thousands of times.
We spent 1/2 day at the hospital the day before the surgery for blood work, and they were fantastic about explaining everything to her...we have an amazing children's hospital in KC. Surgery was Friday morning. It lasted less than 3 hours from when they took her back. She was only on heart/lung bypass about 10 minutes and didn't need blood transfusion. She was pretty groggy the first 24 hours. Saturday she was mostly angry...like your child, she had no symptoms before. By Sunday, she was walking to playroom on her own and in pretty good spirits. On Monday, we went home, with only ibuprofen for pain. By Tuesday she was asking to ride her bike and play on the play set. Everyone told me that's how it would be, but I didn't believe it. She was back on full activity after 6-8 weeks and check ups have shown her heart is healed and back to normal size.
One thing to consider is they asked if we wanted her to have something to relax her before the surgery. I don't like to take unnecessary meds but decided to do it. She was very calm and sleepy when they took her, which is how I was able to not break down until after I was out of her sight. If she'd been upset, it would've been harder to keep it together. She understands now that her heart had a boo boo and the surgery was necessary to fix it, but she still worries some. Her scar is one thin white line down her chest and doesn't bother her at all. Other kids at this age at least think it's cool.
Having been through it, I don't know that there's anything I can say to put your mind at ease, but I just took the approach that we were very lucky it was found and could be fixed. From reading this site, I know that adults have a much harder time than the kids do. Please reach out to me if you have any questions at all. I'll think healing thoughts for your little one.
AnxiousMOM said:
kcmom said:Anxiousmom-my daughter's ASD was found when she was 1 and repaired via OHS at age 4. It was 13mm with one rim too short for any of the devices. Based on Dr. advice, we didn't tell her until 2 days before. We met with surgeon several weeks in advance, which helped my mental state a bit. He explained that he basically creates and repairs an ASD every time he does any OH procedure to get to the other defects, so he had done the procedure thousands of times.
We spent 1/2 day at the hospital the day before the surgery for blood work, and they were fantastic about explaining everything to her...we have an amazing children's hospital in KC. Surgery was Friday morning. It lasted less than 3 hours from when they took her back. She was only on heart/lung bypass about 10 minutes and didn't need blood transfusion. She was pretty groggy the first 24 hours. Saturday she was mostly angry...like your child, she had no symptoms before. By Sunday, she was walking to playroom on her own and in pretty good spirits. On Monday, we went home, with only ibuprofen for pain. By Tuesday she was asking to ride her bike and play on the play set. Everyone told me that's how it would be, but I didn't believe it. She was back on full activity after 6-8 weeks and check ups have shown her heart is healed and back to normal size.
One thing to consider is they asked if we wanted her to have something to relax her before the surgery. I don't like to take unnecessary meds but decided to do it. She was very calm and sleepy when they took her, which is how I was able to not break down until after I was out of her sight. If she'd been upset, it would've been harder to keep it together. She understands now that her heart had a boo boo and the surgery was necessary to fix it, but she still worries some. Her scar is one thin white line down her chest and doesn't bother her at all. Other kids at this age at least think it's cool.
Having been through it, I don't know that there's anything I can say to put your mind at ease, but I just took the approach that we were very lucky it was found and could be fixed. From reading this site, I know that adults have a much harder time than the kids do. Please reach out to me if you have any questions at all. I'll think healing thoughts for your little one.
AnxiousMOM said:
AnxiousMOM said:Dear KC momThank you soooo much for your story. It is all so helpful!!! The first few days I cried so hard but I am trying to be grateful as well at this point in our process. We are so lucky we found it (its 16mm) and that itcan be fixed. I am so scared of the actual surgery and don't think I will be able to rest until it is over and our little girl is OK. I also hope that her heart functions normally after the hole is repaired. I have not told her much yet and will ask the hospital as well. It is a very renowned children's hospital. I am so glad we connected! XOXO
kcmom said:Anxiousmom-my daughter's ASD was found when she was 1 and repaired via OHS at age 4. It was 13mm with one rim too short for any of the devices. Based on Dr. advice, we didn't tell her until 2 days before. We met with surgeon several weeks in advance, which helped my mental state a bit. He explained that he basically creates and repairs an ASD every time he does any OH procedure to get to the other defects, so he had done the procedure thousands of times.
We spent 1/2 day at the hospital the day before the surgery for blood work, and they were fantastic about explaining everything to her...we have an amazing children's hospital in KC. Surgery was Friday morning. It lasted less than 3 hours from when they took her back. She was only on heart/lung bypass about 10 minutes and didn't need blood transfusion. She was pretty groggy the first 24 hours. Saturday she was mostly angry...like your child, she had no symptoms before. By Sunday, she was walking to playroom on her own and in pretty good spirits. On Monday, we went home, with only ibuprofen for pain. By Tuesday she was asking to ride her bike and play on the play set. Everyone told me that's how it would be, but I didn't believe it. She was back on full activity after 6-8 weeks and check ups have shown her heart is healed and back to normal size.
One thing to consider is they asked if we wanted her to have something to relax her before the surgery. I don't like to take unnecessary meds but decided to do it. She was very calm and sleepy when they took her, which is how I was able to not break down until after I was out of her sight. If she'd been upset, it would've been harder to keep it together. She understands now that her heart had a boo boo and the surgery was necessary to fix it, but she still worries some. Her scar is one thin white line down her chest and doesn't bother her at all. Other kids at this age at least think it's cool.
Having been through it, I don't know that there's anything I can say to put your mind at ease, but I just took the approach that we were very lucky it was found and could be fixed. From reading this site, I know that adults have a much harder time than the kids do. Please reach out to me if you have any questions at all. I'll think healing thoughts for your little one.
I read that you are going to be at CHOP, which is such a great hospital! You'll definitely want to connect with the Child Life Department asap. These professionals will help guide you and your daughter through the process by giving you a tour of the hospital , talking about what to expect in a developmentally appropriate way and by giving you advice about what to tell her and when is best. They will be there for you before and after the surgery.
http://www.chop.edu/centers-programs/child-life-education-and-creative-arts-therapy#.VJmwK7hvqg
This is a link to their page.
I just had OHS on October 16. It has been almost 9 weeks and I am now starting to feel myself again. I still have pain in my shoulders and in the sternal area. Sleeping was a huge challenge. I just could not get comfortable. The most challenging part was being extubated. It's a great thing but also uncomfortable. Be sure they explain what is going on to you and your child if you are there for this. Same with getting chest tubes pulled. Some people come in like bulls and say it only takes a second, just take a deep breath. Well, first of all, there is no taking deep breaths right after surgery. And secondly it stinking hurts. So, your daughter will need Child Life there to help her with distraction and breathing practice.
Best of luck to you. If you have any other specific questions, please ask!
Geri
Children bounce back so much faster than adults. I wish you and your family a wonderful holiday. I am so glad to hear you are starting to get to the point where you can be grateful for them finding it. That is a wonderful outlook. I am a second grade teacher. I would also suggest seeing if there are any books (the hospital will have suggestions) that you could read to your child prior to the operation. It may help in understanding what is happening. I also liked the suggestion of keeping everyone calm prior to surgery. A calm patient recovers much better than someone who is all worked up. We are all pulling for your family and here if you continue to need us. Happy holidays!!
GFSCCLS said:
I read that you are going to be at CHOP, which is such a great hospital! You'll definitely want to connect with the Child Life Department asap. These professionals will help guide you and your daughter through the process by giving you a tour of the hospital , talking about what to expect in a developmentally appropriate way and by giving you advice about what to tell her and when is best. They will be there for you before and after the surgery.
http://www.chop.edu/centers-programs/child-life-education-and-creat...
This is a link to their page.
I just had OHS on October 16. It has been almost 9 weeks and I am now starting to feel myself again. I still have pain in my shoulders and in the sternal area. Sleeping was a huge challenge. I just could not get comfortable. The most challenging part was being extubated. It's a great thing but also uncomfortable. Be sure they explain what is going on to you and your child if you are there for this. Same with getting chest tubes pulled. Some people come in like bulls and say it only takes a second, just take a deep breath. Well, first of all, there is no taking deep breaths right after surgery. And secondly it stinking hurts. So, your daughter will need Child Life there to help her with distraction and breathing practice.
Best of luck to you. If you have any other specific questions, please ask!
Geri
Dear Geri,
Thank you, that's such a great idea!!! I will definitely reach out to them. I am so glad you are feeling better! I am so scared and probably wont rest until my little one is successfully finished with surgery. I hope she will be comfortable and not too scared when she wakes up from surgery. I really appreciated your input! XOXO
Stace said:
Children bounce back so much faster than adults. I wish you and your family a wonderful holiday. I am so glad to hear you are starting to get to the point where you can be grateful for them finding it. That is a wonderful outlook. I am a second grade teacher. I would also suggest seeing if there are any books (the hospital will have suggestions) that you could read to your child prior to the operation. It may help in understanding what is happening. I also liked the suggestion of keeping everyone calm prior to surgery. A calm patient recovers much better than someone who is all worked up. We are all pulling for your family and here if you continue to need us. Happy holidays!!
Dear Stace,
This group has been such a comfort to me. I think keeping her comfortable is important as well and a book is a great idea. I really appreciate the support! Warmest Regards!!!
John said:
Anxiousmom,
I understand your initial reaction but glad you have been able to speak to survivors to ease the concern. I am very lucky because I did not have any damage but I would have probably had issues in my 40s. My heart is as good as new and functioning like a "normal" person. My surgeon was amazing leading up to surgery, right before it, after it and we catch up via email regularly and meet up once a year (not for medical reasons just cause).
When are they looking to operate?
Please use your new ASD family. We want to help in anyway possible.
All the best and look forward to talking to you soon.
John
Good morning John,
I really appreciate my ASD family this Christmas. Thanks again for all your experience and advice.
God bless!
kcmom said:
Anxiousmom-my daughter's ASD was found when she was 1 and repaired via OHS at age 4. It was 13mm with one rim too short for any of the devices. Based on Dr. advice, we didn't tell her until 2 days before. We met with surgeon several weeks in advance, which helped my mental state a bit. He explained that he basically creates and repairs an ASD every time he does any OH procedure to get to the other defects, so he had done the procedure thousands of times.
We spent 1/2 day at the hospital the day before the surgery for blood work, and they were fantastic about explaining everything to her...we have an amazing children's hospital in KC. Surgery was Friday morning. It lasted less than 3 hours from when they took her back. She was only on heart/lung bypass about 10 minutes and didn't need blood transfusion. She was pretty groggy the first 24 hours. Saturday she was mostly angry...like your child, she had no symptoms before. By Sunday, she was walking to playroom on her own and in pretty good spirits. On Monday, we went home, with only ibuprofen for pain. By Tuesday she was asking to ride her bike and play on the play set. Everyone told me that's how it would be, but I didn't believe it. She was back on full activity after 6-8 weeks and check ups have shown her heart is healed and back to normal size.
One thing to consider is they asked if we wanted her to have something to relax her before the surgery. I don't like to take unnecessary meds but decided to do it. She was very calm and sleepy when they took her, which is how I was able to not break down until after I was out of her sight. If she'd been upset, it would've been harder to keep it together. She understands now that her heart had a boo boo and the surgery was necessary to fix it, but she still worries some. Her scar is one thin white line down her chest and doesn't bother her at all. Other kids at this age at least think it's cool.
Having been through it, I don't know that there's anything I can say to put your mind at ease, but I just took the approach that we were very lucky it was found and could be fixed. From reading this site, I know that adults have a much harder time than the kids do. Please reach out to me if you have any questions at all. I'll think healing thoughts for your little one.Dear KCMOM,thank you so much for sharing your experience. Its been a great resource to me.I am going to make sure they administer medicine before surgery to keep her clam. How long after the surgery was your daughter unconscious? Im just hoping that they keep her pain under control. Did she have tubes in the whole time of hospital stay? When was she able to talk and walk? I have an appointment with the surgeon so I will make sure to write down all these questions. Once again I really appreciate you sharing your story with me. It's been so comforting. XOXO