TAPVC, Total Anomalous Pulmonary Venous Return, Obstructed

[LucentBirch]

I had this surgery done 19 years ago. Just curious, about how long does the surgery take? How long is the heart stopped?

[stimpie777]

Have you ever had a TAPVR? Could you post that?

[Felchiiee]

My sons echo was very good! It says there is a slight PFO though I am not sure what this is . Could you please tell me?

[Redmond111]

@Felchiiee I'm happy that your echo was good. A PFO stands for Patent Foramen Ovale, which is a normal structure in the upper chambers of the heart. This is basically a flap valve that normally closes at birth, but it can act as a useful popoff valve if you have a heart defect. Your child can do very well with a small PFO, so don't worry. Sincerely, Redmond Burke MD

[Redmond111]

@Felchiiee A PFO stands for "patent forame ovale", this is a normal opening between the left and right atrium. It allows blood to flow from the right atrium to the left atrium in fetal circulation (before the baby is born) because there's no air going to the baby's lungs, so there's no need for blood to go to the lungs. The PFO normally closes at birth, it's like a flap valve. In some babies it stays open for a while, and this doesn't usually cause any problems.

[farstarfilm]

You surgeons are angels! May God be with you always!

[Redmond111]

@farstarfilm You are very kind. We are fortunate to be able to help others, and we appreciate your kind blessing. Sincerely, Redmond Burke MD

[izzimwm]

hi, all I lost my angel to tapvc at 3 months,, cause the was too small to even operate on at 1.7kgs,,I would like to know if anyone had their next pregnancy, and if the baby also had any heart conditions?I would love to try again but want to know the chances of the baby having tapvc again..

[Redmond111]

@izzimwm I'm very sorry for your loss. We can repair premature low birthweight babies with good results. We've operated on babies who weighed 375 grams, so a 1.7 kg baby is big in comparison. Your chances of having another baby with TAPVC are only slightly higher than a family with no history of TAPVC, so go ahead and try again. I will pray for you and your family. Sincerely, Redmond Burke MD

[izzimwm]

@Redmond111 Thankyou so much for your comment dr and it does make me feel so much better knowing that there is a possibility to correct TAPVC even if the baby is on the smaller side. Thankyou and god bless you.

[Felchiiee]

Thank you for uploading this. My son was born with TAPVD (what we call it in New Zealand) He was diagnosed at 9 days old and because it was infracardiac obstructed he had to have emergency surgery as soon as the air ambulance could take us to the children's hospital. He is nearly 4 months now but unfortunately at his last echo they think that his veins are thinning - I'm not sure what that means all I know is more surgery if it is confirmed - we go back for another echo in 3 weeks to check it.

[nkb1111]

@Felchiiee I'm sorry to hear that your son's echo suggests a problem. Perhaps you will get a good report when they look more closely. Is he doing well otherwise, particularly with his feeding and weight gain? These would be encouraging signs. Sincerely, Redmond Burke MD

[Felchiiee]

@nkb1111 @nkb1111 I hope that we get a good report when they look more closely - he will be sedated for this echo so hopefully that means they can get a much better look. He is great at feeding always has been even after surgery it didn't take him that long to pick up breast feeding again - he falls asleep at every feed though but that is the only symptom and even then it's not a major one. His weight gain is good at just over 4 months he is 5.91kg and he was born 3.3kg

[Felchiiee]

@Felchiiee He was discharged from the hospital 2 weeks post surgery at 25 days old and was 3.25kg

[Redmond111]

Thank you for the kind comments. I'm happy your daughter pulled through, I couldn't imagine losing one of my daughters. I hope your friend's baby is OK, who is operating on her, and at what hospital?

[ryeray13]

Thank you so much for posting this. An old friend of mine's baby was just diagnosed with this problem and she is just 2 days old. She will be having this surgery tomorrow. I am always interested in anything heart related because my 8 yr old daughter almost lost her life to Viral Myocarditis when she was just 11 days old. The doctors worked miracles that Christmas day and saved her. Dr Burke it is doctors like you that save our babies and give them a chance at life.

[jbjbjb55]

Our daughther was born in Dec 1995 with TAPVR. She was diognosed when she was 4 months and surgery at 5 months at Mpls Chidrens Hospital. What an incredible video! Thank you

[Redmond111]

@jbjbjb55

I hope it helped you, and that your baby is OK.

Sincerely,

Redmond Burke MD

[Ritchgm]

My daughter was born in 2002 with TAPVR she had her first surgery at 7 days old and a second surgery at about 4 months old she passed away about 2 weeks after her 2nd surgery from pulminary venous stenosis.

[affiliatexx]

I was born with tapvr and i'm now 21 and doing great! I had the surgery back in 1989 when I was 3 days old

[Redmond111]

@affiliatexx

congratulations, you must have a strong will to live to make it through this operation way back then. The technology was a little rougher in those days. You're an inspiration to the next generation of kids with TAPVR.

Thanks for the post.

Sincerely,

Redmond Burke MD

[PauleQueenie]

Post cardiac surgery on the cardiac arteries or veins, is there a restriction on the amount of vasodilatation the patients present? Is this a restriction induced medically so as to avoid stitches rupture?

[Redmond111]

If you could send data to my assistant Arlene at 305-663-8401, we could help. You do have a great team at CHOP, so be assured that the baby is in great hands.

Sincerely,

Redmond Burke

[jmj060183]

@Redmond111

Everything was sent from CHOP to you on Friday. I hope you get it soon the baby really needs your help!!!! Good Luck!!!!!!!!!

[jmj060183]

I am so thankful you are reviewing baby Morgan's case and I hope with all my heart you can help her. I may have found you for a reason!! Good Luck

[jmj060183]

I wish you were closer, my cousins daughter was just rushed to CHOP and things are not looking so sweet. Any advice?

[Redmond111]

@jmj060183

I'm sorry she's in trouble, the CHOP team is great.

Let me know if you have any concerns.

Sincerely,

Redmond Burke MD

[eddiemiller1981]

wow i have a friend going though that right now and they found a new problem and they tried to fix it but they said that if the procedure doesnt work there isnt much more they can do...do i need to get a second opinion... he had his first surgery at 4 days old and then he just had a second surgery the day before his 2 month of being here

[Redmond111]

@eddiemiller1981

These operations are complex, and the best way to evaluate this situation is to look at as much data as possible. I'm sure your friend is in good hands, but if you would like my team to review the data, please call Arlene at 305-663-8401 and she will help you.

Sincerely,

Redmond Burke MD

[shantanak]

I was born with TAPVC with an ASD. I had surgery at 10 months old. I am 22 years old now. I was curious if anyone knew if it was normal to have cyanotic nail beds and feet. Occasional chest pains that come and go with no apparent cause. Also if Dizziness/lightheadedness can occur which causes me to pass out (often orthostatic). I can go months without anything occuring but was curious if this could be related to my TAPVC many years ago or if it is unrelated. Any comments helpful. Thanks Dani

[Redmond111]

@shantanak

Dear Dani,

I'm sorry you are still having symptoms. The best way to reassure yourself is to have a pediatric cardiologist examine you. If you need help finding someone, just call my assistant Arlene at 305-663-8401, and we will assist you.

Sincerely,

Redmond Burke MD

[LAMALCRIADACOM]

i'm always amazed at how fast newborns recover

hehe 'day 3,nice socks' xD

[philishasue]

My son had TAPVR, VSD, and PDA repair 12 hours after birth. He has often asked what happened and how they fixed all the defects. We have explained it to him, shown him diagrams, all the usual ways. He watched this with me and was amazed. This truly gave a picture to his early days. He is now 12 years old and a very active and athletic young man. Aside from his scar, you would never know he was born with heart defects. Thanks for posting this and giving him a better understanding.

[Redmond111]

@philishasue

Thanks for the great story, and congratulations on your son's recovery.

He sounds like a remarkable child.

Sincerely,

Redmond Burke MD

[sonayera]

I'm having my PAPVR corrected in 12 days!

[Redmond111]

@sonayera

I hope everything went well. Please let us know.

Sincerely,

Redmond Burke MD

[sonayera]

@Redmond111

Everything went well!!! It was such an experience... I will post some videos talking about that soon!

[kjiojdm]

hi i made a comment a few months back thanks for the answer i havnt had a check up in about 5 years but i did go every year for a long time another question is i have had chest pains all my life if i do anything strenous i get pain but the odd thing is i dont even have to be doning anything and i just suddenly start hurting is this a side effect of TAPVC or possably something else? again thanks for the comment from previous post and thanks for the video

[Redmond111]

@kjiojdm

This is a difficult question to answer without examining you. It is possible that your pain is related to your chest wall incision and repair. If you are concerned and have persistent pain, please call Arlene in my office at 305-663-8401, and we will help you find a pediatric cardiologist who can evaluate you.

Sincerely,

Redmond Burke MD

[mandy4043451]

omg the baby is ok thank good!!! woowow i can finey breath

[Redmond111]

@mandy4043451

This baby is doing very well, thanks for your kind thoughts.

Sincerely,

Redmond Burke MD

[mandy4043451]

omg this is so sad i hope the baby is ok wishes to the family!!!!! omg just so sad you want to cry man ahhh not to be mean but it's gorss at the same time ugh!!!! but wishes to the fam xoxo

[kjiojdm]

I too hav TAPVC. Had sugury in 1989. now bein 20 I understand more what this is. Was wondering if there are any long term effects that need to be looked out for. And i have a cavity where my sternum is. And wondering if that is a common side effect from the sugury.

[Redmond111]

Great comment, you will help many people who have had this operation. After TAPVC repair, you need to be checked to ensure that the pulmonary veins are not obstructed. The problem with your sternum is related to the incision, which might not have been done well. This can be repaired if it really bothers you.

Sincerely,

Redmond Burke MD

[smittyspecial]

he has amazingly steady hands ay

[Redmond111]

@smittyspecial

Thanks, I never thought I'd end up sewing for my profession, just turns out that I'm good at it.

Sincerely,

Redmond Burke MD

[cardiacsy]

I am a PG student,doing master in cardiovascular surgery...this type of video really help us to know the differences in procedures.Thank you very much .

[Redmond111]

Thanks for the note, our goal is to help students like you.

Please let me know how we can improve.

Sincerely,

Redmond Burke MD

[Redmond111]

@cardiacsy

Thanks for the note, happy to help, good luck with your career. Thanks for saving babies.

Redmond Burke MD

[rockntaylor008]

i have TAPVC and i've always wondered what it looks like. i've wondered for a long time i'm 19 now so thats a long time thanks for posting this

[Redmond111]

I'm happy to hear that you're doing well, it's great to hear from patients like you. Your positive experience is encouraging to parents with children undergoing TAPVC repair. Good luck.

[Redmond111]

@rockntaylor008

I'm happy to hear that you are doing well so many years after TAPVC repair, congratulations.

Sincerely,

Redmond Burke MD

[Redmond111]

@rockntaylor008

You must have had a great surgeon nineteen years ago, I'm sure he'd be happy to know you're doing so well, and that you're thoughtful enough to respond to this video.

Aim high.

Sincerely,

Redmond Burke MD