Tetralogy of Fallot

Posted by Gina @gcatalfamo, Jun 13, 2017

When my twin daughters were a little under a year I was told they had boot shaped hearts. The doctor did a ton of testing on them and other than their hearts being shaped like a boot and an innocent heart murmur he said they are perfectly healthy. I tried doing research and everything kept saying Tetralogy of Fallot but their doctor side they do not have that. Just special hearts and they will be fine. Has this every happened to anyone. I hope he is right, but as a mother I need a second opinion. They are now 5 and will start sports soon and I do not want something to be wrong and me not know.

Hello @gcatalfamo and welcome to Mayo Connect. Thank you for posting this interesting question about your twin daughters’ heart problems. I would invite you to look at a Mayo video presentation on congenital heart disease. It appears as if there were some questions in this discussion about Tetralogy of Fallot.
http://mayocl.in/2sywU0S. Also, on Mayo’s website there is some information about this disorder http://mayocl.in/2slX0DZ. In addition, one grandmother. @billmichalski, wrote about it on Mayo Connect. I’d also like to connect you with adult survivors of tetralogy of Fallot: @ricke62 @pfsinger and @4n6champ. I hope that they will enter this conversation with us. In addition Jimmy Kimmel recently revealed his son Billy was born with tetralogy of Fallot with pulmonary atresia, here is the link, http://mayocl.in/2pukyEU. Other members of our Mayo Connect community will most likely join in this conversation as well. In the meantime, please keep in touch with our Mayo Connect community and let us know how we can support you as you look for answers to your questions. Teresa

REPLY

Hello, sorry I’m new to Mayo Connect. I’m from Singapore and my son (now 5 months old) was diagnosed with Tetralogy of Fallot with Doubly committed VSD when he was born. He has had a 4mm BT shunt inserted. He also has a single coronary artery. I was wondering how I can get a second opinion from the doctors at Mayo Clinic where my parent in law’s are based.

REPLY
@vanohkw

Hello, sorry I’m new to Mayo Connect. I’m from Singapore and my son (now 5 months old) was diagnosed with Tetralogy of Fallot with Doubly committed VSD when he was born. He has had a 4mm BT shunt inserted. He also has a single coronary artery. I was wondering how I can get a second opinion from the doctors at Mayo Clinic where my parent in law’s are based.

Jump to this post

Hello @vanohkw

Welcome to Mayo Connect. I can certainly understand your concern for your son's health. As parents, we always want the best for our children and that is especially important when it comes to their health. If you are interested in a consult to Mayo Clinic, here is a link that will give you information for obtaining an appointment to Mayo Clinic if you are an international patient, https://www.mayoclinic.org/appointments

From what you said in your post, it sounds like your parents in law live in the U.S.?

REPLY

Hi @vanohkw and @gcatalfamo,

I’d also like to introduce you to other Connect members – @601meagan @wymanjg @lizbets @judytru who had newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. If I’m correct, she is now 29.

Beside all the information @hopeful33250 has provided, the American Heart Association’s webpage has some great Q&A-type details about this condition https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/tetralogy-of-fallot

@vanohkw, international patients can also request an appointment at any Mayo Clinic location online: http://www.mayoclinic.org/departments-centers/international/appointments
A representative from one of Mayo’s international appointment offices will respond to your request.
For information about billing and insurance, you can go online, http://www.mayoclinic.org/departments-centers/international/financial-services
Or call International Finance at 507-284-5063

@gcatalfamo, I’d be very skeptical about any information on the Internet – it’s certainly not a good source for health information or advice. A lot of it is written by people who are not medically trained, and also may have a conflict of interest!
Your doctor is the best resource; could you ask him to give you more information or an explanation that might ease your worries?

REPLY
@kanaazpereira

Hi @vanohkw and @gcatalfamo,

I’d also like to introduce you to other Connect members – @601meagan @wymanjg @lizbets @judytru who had newborns and young children with heart disease. @judytru‘s daughter, for example, was born with coarctation of the aorta and aortic stenosis. If I’m correct, she is now 29.

Beside all the information @hopeful33250 has provided, the American Heart Association’s webpage has some great Q&A-type details about this condition https://www.heart.org/en/health-topics/congenital-heart-defects/about-congenital-heart-defects/tetralogy-of-fallot

@vanohkw, international patients can also request an appointment at any Mayo Clinic location online: http://www.mayoclinic.org/departments-centers/international/appointments
A representative from one of Mayo’s international appointment offices will respond to your request.
For information about billing and insurance, you can go online, http://www.mayoclinic.org/departments-centers/international/financial-services
Or call International Finance at 507-284-5063

@gcatalfamo, I’d be very skeptical about any information on the Internet – it’s certainly not a good source for health information or advice. A lot of it is written by people who are not medically trained, and also may have a conflict of interest!
Your doctor is the best resource; could you ask him to give you more information or an explanation that might ease your worries?

Jump to this post

Hi there! You were close! Amy turned 30 this past year. She is doing well. Always available to anyone that would like to talk or ask questions about our experiences. Will check messages again tomorrow.

REPLY
Please login or register to post a reply.