Hole in heart for child


How old is your gal now? Did she show any symptoms so far? Urs still at monitoring stage right, nvr say need surgery yet?
She is coming 2.5yos. So far never show any symptoms yet. Dr Jonathan did mention surgery but no need to be so fast. But he did suggest best to be before the kid goes primary school so as not to obstruct their studies.
Did dr jonathan mention surgery to u as well?
 
She is coming 2.5yos. So far never show any symptoms yet. Dr Jonathan did mention surgery but no need to be so fast. But he did suggest best to be before the kid goes primary school so as not to obstruct their studies.
Did dr jonathan mention surgery to u as well?
During the 2nd checkup, Prof Tan told us that surgery is likely to be required but will monitor first. The last checkup, Dr Jonathan said if the hole can close by itself then no need surgery so we asked him the period to monitor and he said will try to monitor till bb is 6 mths old. So far, my bb weight gain is ok, at the 50th percentile.
 
During the 2nd checkup, Prof Tan told us that surgery is likely to be required but will monitor first. The last checkup, Dr Jonathan said if the hole can close by itself then no need surgery so we asked him the period to monitor and he said will try to monitor till bb is 6 mths old. So far, my bb weight gain is ok, at the 50th percentile.
The monitoring is only till 6 months old? If by then hole never close will have to do surgery ASAP? Or can wait till the baby is bigger?
 
The monitoring is only till 6 months old? If by then hole never close will have to do surgery ASAP? Or can wait till the baby is bigger?
I am not sure too, i talked to 1 mummy which her bb undergone surgery at 5 mths for vsd closure. She said her child developed bronchitis and very poor feedings, so they decided to do the surgery. So, i think have to monitor the baby condition as he grows. If his health and development affected, i guess have to do the surgery to close up the hole.
 
The monitoring is only till 6 months old? If by then hole never close will have to do surgery ASAP? Or can wait till the baby is bigger?
Just curious, for ur gal case, detected at birth and no sign of closure till now? Since ur gal did not have any symptoms, surgery still required? If so, how u know when to go for surgery?
 
Just curious, for ur gal case, detected at birth and no sign of closure till now? Since ur gal did not have any symptoms, surgery still required? If so, how u know when to go for surgery?
My girl is asd and the symptoms will be there if she gets bigger. Even if no symptoms and the hole is still there, eventually also have to close it to prevent anything from happen. Like play safe?
Actually surgery we can do anytime, in fact he mentioned the earlier we do it's better for the kid as we won't know what damage the hole will do to the other parts of the heart. Like vein or valves etc. He did mentioned its unikely to close as its big hole.

Did the 5mths old vsd closure surgery for the bb went well? As in feeding improved and no more symptoms?
 
My girl is asd and the symptoms will be there if she gets bigger. Even if no symptoms and the hole is still there, eventually also have to close it to prevent anything from happen. Like play safe?
Actually surgery we can do anytime, in fact he mentioned the earlier we do it's better for the kid as we won't know what damage the hole will do to the other parts of the heart. Like vein or valves etc. He did mentioned its unikely to close as its big hole.

Did the 5mths old vsd closure surgery for the bb went well? As in feeding improved and no more symptoms?

Yes, the surgery went well for the 5 mths old bb and feedings ok after surgery. The boy is active and healthy now. Prof Tan did tell us that the surgery after care will be smoother than what we imagined and they just did a surgery for a 5kg bb recently too. If surgery is really needed, i guess it is good to do it before the heart or lungs have issues. Hope everything goes well for our kids and they will grow up healthy and strong!
 
Yes, the surgery went well for the 5 mths old bb and feedings ok after surgery. The boy is active and healthy now. Prof Tan did tell us that the surgery after care will be smoother than what we imagined and they just did a surgery for a 5kg bb recently too. If surgery is really needed, i guess it is good to do it before the heart or lungs have issues. Hope everything goes well for our kids and they will grow up healthy and strong!
That's nice to know! Cos it's very heartbreaking to see your kid with so many tubes and lying in the ICU....Sigh.
Did the mummy told you how long does it take for the baby to be discharged? I read alot and it seems they can go back after 4 to 5 days.
 
That's nice to know! Cos it's very heartbreaking to see your kid with so many tubes and lying in the ICU....Sigh.
Did the mummy told you how long does it take for the baby to be discharged? I read alot and it seems they can go back after 4 to 5 days.
Ya, i can understand the feelings too. For the 5 mths bb, he did his heart surgery in NUH by Dr Shankar, stayed in ICU and step down ward for 1 week before discharged.
 
Ya, i can understand the feelings too. For the 5 mths bb, he did his heart surgery in NUH by Dr Shankar, stayed in ICU and step down ward for 1 week before discharged.
Yes I heard Dr Shanker is a good surgeon. Many good reviews about him. Need to check with Dr Jonathan about his contact.
Meaning total is discharged after one week?
 
Yes I heard Dr Shanker is a good surgeon. Many good reviews about him. Need to check with Dr Jonathan about his contact.
Meaning total is discharged after one week?
Yes, discharged after 1 week. On a positive note, recovery for kids with this type of surgery is good. Is heartbreaking to see them going thru but for the sake of being healthy in e long run, we just need to be strong. Can u update me if ur gal gg for surgery so that i can be prepared too?
 
Yes, discharged after 1 week. On a positive note, recovery for kids with this type of surgery is good. Is heartbreaking to see them going thru but for the sake of being healthy in e long run, we just need to be strong. Can u update me if ur gal gg for surgery so that i can be prepared too?
Yes, I have heard of the good recovery. Yes for the sake of long run
Sure, we shall update one another :)
 
Hi all, saw your posts and felt more informed.. I'm told that bb has heart defects at 20weeks scan last Friday. Went for second scan with a specialist and unfortunately he also mentioned the same problem as the sonographer. Am seeing my gynae tmr and feeling super worried...
 
Hi all, saw your posts and felt more informed.. I'm told that bb has heart defects at 20weeks scan last Friday. Went for second scan with a specialist and unfortunately he also mentioned the same problem as the sonographer. Am seeing my gynae tmr and feeling super worried...
Hi,

What is the heart defect that is being diagnosed?
 
This defect got VSD as well? Did gynae mention about the surgery part?
Today we went kkh for amniocentesis and rescan.. The doctor confirmed the findings are consistent and it's TOF Tetralogy of Fallot. We are meeting the children's cardiac team on Mon to update us about surgery post birth etc. They will be able to advise further. Thanks for replying dear!
 
Today we went kkh for amniocentesis and rescan.. The doctor confirmed the findings are consistent and it's TOF Tetralogy of Fallot. We are meeting the children's cardiac team on Mon to update us about surgery post birth etc. They will be able to advise further. Thanks for replying dear!
Glad to hear that! At least it is diagnosed early. For alot of cases, it is not diagnosed until baby is out. Early intervention is good :)
 
I read up and there was a period of info overload and we were so frightened and thought about the worst case scenarios...but we'll see what the team said and hopefully surgery can help. At this point, it's definitely emotionally overwhelming...
 
I read up and there was a period of info overload and we were so frightened and thought about the worst case scenarios...but we'll see what the team said and hopefully surgery can help. At this point, it's definitely emotionally overwhelming...
Yes definitely. No parents will want their children to go through all these. And everything carries a risk even the medication we took. I also freak out by all the information online. But as parents we have to help them and go through whatever obstacles they need to face. I know some parents chose to live in denial and in the end cause harm to the child.
Parenting is really the toughest job in the world.

Is this your first child?
 
Yes this is our first baby... I have read up online and know this can be fixed aft birth. But at the same time we are afraid of the impact on his quality of life... I also saw some parents decided to terminate the pregnancy because of the complications. Sigh... I worried if we push through, is it the best option for him... But at the same time, he's a fighter and we dun want to deny him of a chance to live.
 
Yes this is our first baby... I have read up online and know this can be fixed aft birth. But at the same time we are afraid of the impact on his quality of life... I also saw some parents decided to terminate the pregnancy because of the complications. Sigh... I worried if we push through, is it the best option for him... But at the same time, he's a fighter and we dun want to deny him of a chance to live.
Yes I understand. As every defect is different. Some are more straight forward. Is this condition more complex than other heart defects?
I'm sure with the technology now, they are able to correct it successfully.
Yes you are right, he has the chance to live and fight it himself!
 
This has a few problem but apparently a few surgeries can help.. Of course it comes with risks.. I will remain hopeful and let our amniocentesis results and doctors advise us on the most appropriate action to take. Fingers crossed
 
Hi Ms Rainbow,

Just to share my boy’s journey. My amnio was normal.

However at birth, he was diagnosed with TOF. We were terribly worried as we were not prepared for the heart defect condition and we understand that it would be a open heart surgery. He was subsequently referred to cardiac KKH and was operated at 3 mths old by Dr Shankar ( the best cardiac paediatrician surgeon). We brought him to see Dr Shankar as he was experiencing poor feeding and constantly turn blue. Dr Shankar gave his opinion that his heart defect was not TOF but a large VCD to be corrected. He needs open heart surgery to patch the leak. Instead of surgery at 9 mths old, we decided to go ahead with surgery at 3 mths old. Surgery was a success and he was in the icu for about 2 weeks. U got to prepare yourself that it will be v tough and heart wrenching to see him in the ICU as he will have a lot of tubes attached to him. With the heart surgery a success, the genetic specialist sees us with more bad news. The chromosome test that they did on him showed that he has chromosome disorder which was not pick up by the amnio test. The name of the Chromosome test is known as the FISH test. He was diagnosed with Di George syndrome. It has a large spectrum of possible complications and the most crucial problem is Low immunity and heart defects. He falls sick easily and his development was v slow in terms of cognitive and physical. In the past, I thought that once amnio is clear, the baby should be born healthy and we were wrong. Amnio picks up the more serious chromosome problem but actually there can many variations to chromosome issues.

To fast forward, my boy went through therapies to strengthen his occupational, speech through rainbow centre (3 days a week) and we also put him under normal childcare (2days a wk). He struggle in the normal childcare as he could not keep up. We spend a lot of time and money to get the best from the therapy so that he can have a good headstart. It was a very tough journey with fears, tears and hard work. I was initially living in denial and I was not very prepared to accept the difficulties that he faced. However, with the support from my husband and my family, everyone showered him with love and care, he flourished. He is in upper primary now. He plays Badminton and Basketball. He goes for review every year with cardiac and genetic doc at KKH. He still struggles a lot in his studies. His teachers are aware of his heart and development problem but all are supportive and willing to help. At the end of the road, I have learnt that a child can only flourish as much as the effort and love u put in. U cherish his milestones rather than comparing him with normal kids. Most important, pick up your strength as fast u could, accept they are special and early intervention is the most crucial step to get them the head start that they need!

Don’t give up hope.
 
Hi Ms Rainbow,

Just to share my boy’s journey. My amnio was normal.

However at birth, he was diagnosed with TOF. We were terribly worried as we were not prepared for the heart defect condition and we understand that it would be a open heart surgery. He was subsequently referred to cardiac KKH and was operated at 3 mths old by Dr Shankar ( the best cardiac paediatrician surgeon). We brought him to see Dr Shankar as he was experiencing poor feeding and constantly turn blue. Dr Shankar gave his opinion that his heart defect was not TOF but a large VCD to be corrected. He needs open heart surgery to patch the leak. Instead of surgery at 9 mths old, we decided to go ahead with surgery at 3 mths old. Surgery was a success and he was in the icu for about 2 weeks. U got to prepare yourself that it will be v tough and heart wrenching to see him in the ICU as he will have a lot of tubes attached to him. With the heart surgery a success, the genetic specialist sees us with more bad news. The chromosome test that they did on him showed that he has chromosome disorder which was not pick up by the amnio test. The name of the Chromosome test is known as the FISH test. He was diagnosed with Di George syndrome. It has a large spectrum of possible complications and the most crucial problem is Low immunity and heart defects. He falls sick easily and his development was v slow in terms of cognitive and physical. In the past, I thought that once amnio is clear, the baby should be born healthy and we were wrong. Amnio picks up the more serious chromosome problem but actually there can many variations to chromosome issues.

To fast forward, my boy went through therapies to strengthen his occupational, speech through rainbow centre (3 days a week) and we also put him under normal childcare (2days a wk). He struggle in the normal childcare as he could not keep up. We spend a lot of time and money to get the best from the therapy so that he can have a good headstart. It was a very tough journey with fears, tears and hard work. I was initially living in denial and I was not very prepared to accept the difficulties that he faced. However, with the support from my husband and my family, everyone showered him with love and care, he flourished. He is in upper primary now. He plays Badminton and Basketball. He goes for review every year with cardiac and genetic doc at KKH. He still struggles a lot in his studies. His teachers are aware of his heart and development problem but all are supportive and willing to help. At the end of the road, I have learnt that a child can only flourish as much as the effort and love u put in. U cherish his milestones rather than comparing him with normal kids. Most important, pick up your strength as fast u could, accept they are special and early intervention is the most crucial step to get them the head start that they need!

Don’t give up hope.


Thank you dear...I'm grateful that u and Rhea_ling stepped in at this moment. We conceived the baby through IVF and we weren't expecting a positive. However, we were delighted when the nurse told us tt we are pregnant. When we got to know abt the TOF part, we teared... We tried to do what we can for the baby now, doing tests and seeing pd cardiac team and listen to their advice. Things are moving fast because in case of any further abnormalities, the docs are rushing to get it done before 24 weeks. I'm afraid tt we are making a mistake... So I'm v torn right now... I can only pray for the best outcome
 
Dear Parents...

Gone through this topic of discussion and requesting your valued suggestions/opinions.
Our 5.5 year old boy recently detected with large Artial septal defect (ASD) hole of size approx. 19 mm~
Heartbreaking news for us and can’t explain the feelings..
He is a healthy baby and no prior symptoms otherwise.

Consulted with Cardiologists and Cardio surgeon.
Recommendation from Doctors after 2nd opinion, to perform the open heart surgery. ASD device closure not recommended.

Noted from this entire discussion , Dr. S. Shankar is best and highly recommended in this group.
He is now based in Pvt hospital and not associated with KKH/NUH.
We are in Pvt appointment status both to Public/Pvt Hospital.
However still want to prefer the surgery carried-out in Public hospital ( NUH/KKH).

Any suggestion please with other Pediatric cardiac surgeons that you have encountered recently in KKH/NUH ?

Not sure if Insurance can cover this type of surgery, if anyone have any prior exp, kindly share.

Many Thanks in advance.
 
Last edited:
Dear Parents...

Gone through this topic of discussion and requesting your valued suggestions/opinions.
Our 5.5 year old boy recently detected with large Artial septal defect (ASD) hole of size approx. 19 mm~
Heartbreaking news for us and can’t explain the feelings..
He is a healthy baby and no prior symptoms otherwise.

Consulted with Cardiologists and Cardio surgeon.
Recommendation from Doctors after 2nd opinion, to perform the open heart surgery. ASD device closure not recommended.

Noted from this entire discussion , Dr. S. Shankar is best and highly recommended in this group.
He is now based in Pvt hospital and not associated with KKH/NUH.
We are in Pvt appointment status both to Public/Pvt Hospital.
However still want to prefer the surgery carried-out in Public hospital ( NUH/KKH).

Any suggestion please with other Pediatric cardiac surgeons that you have encountered recently in KKH/NUH ?

Not sure if Insurance can cover this type of surgery, if anyone have any prior exp, kindly share.

Many Thanks in advance.

Hi,
My baby has a vsd that is detected at birth and is currently following up with kkh cardiac. We will be meeting the surgeon to discuss on the surgery for his vsd repair as the doctor discovered that his heart valve is affected on the latest checkup in Mar. So, it is recommended to do surgery instead of waiting for the hole to close. It is a very scary process but we have no choice if this is the best solution.
 
Hi,
My baby has a vsd that is detected at birth and is currently following up with kkh cardiac. We will be meeting the surgeon to discuss on the surgery for his vsd repair as the doctor discovered that his heart valve is affected on the latest checkup in Mar. So, it is recommended to do surgery instead of waiting for the hole to close. It is a very scary process but we have no choice if this is the best solution.

Hi ,

Do you know the name of the surgeon in KKH that you have plan for the forthcoming surgery?

Thanks for your reply.
 
Hi ,

Do you know the name of the surgeon in KKH that you have plan for the forthcoming surgery?

Thanks for your reply.
I do not know yet as the appt is on 6 apr. I will let you know after we meet him. For your boy case, the asd is not detected at birth and only discovered at 5 yo?
 
I do not know yet as the appt is on 6 apr. I will let you know after we meet him. For your boy case, the asd is not detected at birth and only discovered at 5 yo?

We only got discovered in last week.
Not detected anything during birth and all the way last 5.5 years.
 
Dear Parents...

Gone through this topic of discussion and requesting your valued suggestions/opinions.
Our 5.5 year old boy recently detected with large Artial septal defect (ASD) hole of size approx. 19 mm~
Heartbreaking news for us and can’t explain the feelings..
He is a healthy baby and no prior symptoms otherwise.

Consulted with Cardiologists and Cardio surgeon.
Recommendation from Doctors after 2nd opinion, to perform the open heart surgery. ASD device closure not recommended.

Noted from this entire discussion , Dr. S. Shankar is best and highly recommended in this group.
He is now based in Pvt hospital and not associated with KKH/NUH.
We are in Pvt appointment status both to Public/Pvt Hospital.
However still want to prefer the surgery carried-out in Public hospital ( NUH/KKH).

Any suggestion please with other Pediatric cardiac surgeons that you have encountered recently in KKH/NUH ?

Not sure if Insurance can cover this type of surgery, if anyone have any prior exp, kindly share.

Many Thanks in advance.

Hi dear, sorry to hear this but your boy will be ok I'm sure. The feelings u are going through is overwhelming and I can relate to that. Right now, what did the doctor in the govt hosp said abt the timing of the surgery? Will it be soon?
 
Hi,
My baby has a vsd that is detected at birth and is currently following up with kkh cardiac. We will be meeting the surgeon to discuss on the surgery for his vsd repair as the doctor discovered that his heart valve is affected on the latest checkup in Mar. So, it is recommended to do surgery instead of waiting for the hole to close. It is a very scary process but we have no choice if this is the best solution.
Hi dear, how old is your child already? Yes indeed, the best solution is to do a surgery for e best long term outcome. I'm also following up at KKH Cardiac and the doc said it will be best for baby to grow to 8kg or 6mth/8mths to perform the surgery. My baby is now 7 weeks old and we just have to monitor him.
 
Hi dear, sorry to hear this but your boy will be ok I'm sure. The feelings u are going through is overwhelming and I can relate to that. Right now, what did the doctor in the govt hosp said abt the timing of the surgery? Will it be soon?
Beacuse of Covid19 , elective surgery postponed. Will be performed After 2/3 months. they not emergency but to be surgery to be performed, no other choice.
 
Hi dear, how old is your child already? Yes indeed, the best solution is to do a surgery for e best long term outcome. I'm also following up at KKH Cardiac and the doc said it will be best for baby to grow to 8kg or 6mth/8mths to perform the surgery. My baby is now 7 weeks old and we just have to monitor him.
My baby is 9.5 mths old now, 8.7kg. We also monitor him from birth till now and was hoping to self heal. He did not have any symptoms but from the echo scan, his valve is trying to close the hole which is not the right way. I can understand the feelings when the doctor told me my bb got a hole in his heart. For now, we can only be strong and go thru this journey with him. Frankly speaking, i am still very scared and sad now but will be strong for my baby.
 
My baby is 9.5 mths old now, 8.7kg. We also monitor him from birth till now and was hoping to self heal. He did not have any symptoms but from the echo scan, his valve is trying to close the hole which is not the right way. I can understand the feelings when the doctor told me my bb got a hole in his heart. For now, we can only be strong and go thru this journey with him. Frankly speaking, i am still very scared and sad now but will be strong for my baby.
He's such a strong boy! He will be fine! In these past months, is there anything to take note while taking care of him cos my son is only 7 weeks and I'm also worried while waiting for the op.
He's such a happy bubbly baby now!
 
He's such a strong boy! He will be fine! In these past months, is there anything to take note while taking care of him cos my son is only 7 weeks and I'm also worried while waiting for the op.
He's such a happy bubbly baby now!
Hi mummy, so long as he is drinking and growing well will be fine. Initially, i was also worried but my baby is just like a normal baby since birth. When he is younger, he will pant a bit while drinking milk so we let him take a break during feeding. As he gets bigger, he can drink all at one go and eats a lot of food now. I hope that he will have a smooth surgery and recovery and grow up healthy and happy. Stay positive and strong, mummy!
 
Hi mummy, so long as he is drinking and growing well will be fine. Initially, i was also worried but my baby is just like a normal baby since birth. When he is younger, he will pant a bit while drinking milk so we let him take a break during feeding. As he gets bigger, he can drink all at one go and eats a lot of food now. I hope that he will have a smooth surgery and recovery and grow up healthy and happy. Stay positive and strong, mummy!
Hi dear, same here. Baby is happy and cute, and he's also panting abit while drinking, but will stop n continue. I burp him to take a break. I just v scared if he cries. So I minimise that too but responding quickly to his needs. Thank you for your encouragement! He's gonna be a strong fighter!
 
Hi dear, same here. Baby is happy and cute, and he's also panting abit while drinking, but will stop n continue. I burp him to take a break. I just v scared if he cries. So I minimise that too but responding quickly to his needs. Thank you for your encouragement! He's gonna be a strong fighter!
Which cardiac doc are you following up with?
 
He is asymptomatic. No physical symptoms. Only it’s always pain to feed him. He took longer time.
I see, for baby's case usually it's feeding cos I understand it's their "exercise" as compared to toddlers and children. So I dun force but to see how much he wants. But he's an impatient eater lol and likes to drink, so I play by ear each time.
 

Hi, saw that in the latest post, surgery will be postpone due to covid. May i check if any of your baby had done the patching of the hole in recent times? My girl has vsd and was suggested by dr choo to close the hole. Thanks in advance!
 

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