I am 28 years old, and 18 weeks pregnant. I have had 3 open heart surgeries, which was the fontan procedure in 1989. I have lived as close to a normal life as I could hope for - with only monthly blood draws because I am on blood thinners and an annual check in with my cardiologist. I played sports all through growing up and graduated high school and college. I am so thankful for this procedure because without it, I would have died young. Everything is going great so far in pregnancy and I am so excited to welcome a little one to the world in about 5 months. I have all the faith in the world I will continue to live a blessed, full life. Staying active and keeping my heart healthy is as important as ever, but I enjoy being active and am so thankful I am able to.
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I'd love to hear more of your story and how things are going with your pregnancy. My daughter had the Glen when she was 4 months. She is 5 now and they're wanting to do the Fontan. Her heart defect is very complicated and they're not sure if they will even be able to do it. But one of the things I've always wondered about was if she'll be able to have kids some day. Thanks for your post. Updates welcome!
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Thanks for sharing. Your post gives hope to all of us who have children with heart defects requiring these procedures. Here's to long life! ❤ God bless
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I had a modified fontan at the age of 9, I am now 34, with children of my own and they are fine! I feel great and plan on kicking around for a long time :)
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wow its really nice to know that you have been doing so well after have two fontans, I also had 2 fontans. At the age of 14 I had a double fontan. At age 36 I had a modified Fontan and maze procedure. I am now 49 years old and was told that I was one of the oldest.
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I had this exact procedure. I am now 28 years old. My last procedure was at the age of 4. I live a perfectly normal life. Unfortunately due to this procedure, I've developed scar tissue in the liver. It's not life threatening, but It is something to look our for.
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Thank you soooooo so much for this post. I am currently 28 years old and I also have the Fontan procedure. I always wanted to have children but was a little concerned. It's funny I ran into your post because I just had a doctor's appointment concerning this. You have definitely given me hope. I would really love to connect with you if that's ok. It would be nice to speak to someone about this!
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I gave birth to a now very healthy baby boy the beginning of November. He did come 2 months early and no one is really sure why - not sure if it was because of my heart or not. He was in the NICU for 3 weeks before he got to come home. Before I got pregnant I did an exercise stress tests and an MRI to try and see if my body could handle a pregnancy. Throughout the pregnancy and childbirth my heart stayed as strong as ever. I had an amazing team of doctors who were there for me the whole time to answer my questions and monitor my progress. Also, thankfully, my baby is healthy and no congenital heart defect for him :)
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Hi..I had the fontan procedure at age 5 and then a fontan revision at age 21..I am now 36. I have suffered from arrhythmias since age 16 and now currently have scarring of my liver..I stil consider myself fairly healthy everything considered.
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Hi all, I am 34 years old man and Fontan survivor. My specific congenital condition is: Left univentricular heart with normo-correlated vessels. I have received 3 surgeries:
1- Bandage of Pulmonary Artery (1984)
2- Glenn Shunt Bilateral modified with Darnus Kaje Stansell (1989)
3- Fontan Extracardiac Conduit Inferior Vena Cava-Artery Pulmonary Right (1991)
Since then, I have been followed by the same hospital. I do check-ups and visits (which include stress tests, blood tests, ecocardio, liver checks, and holters) every year and an MRI every 2 years.
My daily drugs are: 1 aspirin (100mg), 1 lasix (25mg), and 1 enalapril (20mg).
Some of my medical stats:
1-My Last stress test took place in December 2017 and was 11mins long. My oxygen saturation was at 92% (base), and dropped to 87% when I stopped the test. Max blood pressure was 158/70mmHG. Heart rate max 158bpm- 85%FC max theoretical. Oxygen consumption: 29ml/Kg/min.
2-My oxygen saturation drops to 87-89 when I am on a flight.
3-The last blood test (Dec 2017) returned good values.
4- in the last Holter (Dec 2017), no symptoms were detected.
Regarding my life in general:
I got Appendicitis with peritonitis in 2001.
I got a bachelor degree in Computer Science, a Master in Advanced topics in Computer Science, and from 2012 I started a PhD in Software Engineering. I have taught courses at the University level and would like to become a professor in my field of research.
I try to do and I have done different recreational sports such as biking, tai chi, squash, soccer, kung fu, swiming. I would like to increase my activity level. Normally I exercise at the rate of 3 to 4 times a week.
I try to travel as much as possible (2 intercontinental flights per year since 2012).
I do everything I want until I get tired and I stop or slow it down.
My condition is "stable" for a Fontan survivor.
I hope this can help, good luck!
1- Bandage of Pulmonary Artery (1984)
2- Glenn Shunt Bilateral modified with Darnus Kaje Stansell (1989)
3- Fontan Extracardiac Conduit Inferior Vena Cava-Artery Pulmonary Right (1991)
Since then, I have been followed by the same hospital. I do check-ups and visits (which include stress tests, blood tests, ecocardio, liver checks, and holters) every year and an MRI every 2 years.
My daily drugs are: 1 aspirin (100mg), 1 lasix (25mg), and 1 enalapril (20mg).
Some of my medical stats:
1-My Last stress test took place in December 2017 and was 11mins long. My oxygen saturation was at 92% (base), and dropped to 87% when I stopped the test. Max blood pressure was 158/70mmHG. Heart rate max 158bpm- 85%FC max theoretical. Oxygen consumption: 29ml/Kg/min.
2-My oxygen saturation drops to 87-89 when I am on a flight.
3-The last blood test (Dec 2017) returned good values.
4- in the last Holter (Dec 2017), no symptoms were detected.
Regarding my life in general:
I got Appendicitis with peritonitis in 2001.
I got a bachelor degree in Computer Science, a Master in Advanced topics in Computer Science, and from 2012 I started a PhD in Software Engineering. I have taught courses at the University level and would like to become a professor in my field of research.
I try to do and I have done different recreational sports such as biking, tai chi, squash, soccer, kung fu, swiming. I would like to increase my activity level. Normally I exercise at the rate of 3 to 4 times a week.
I try to travel as much as possible (2 intercontinental flights per year since 2012).
I do everything I want until I get tired and I stop or slow it down.
My condition is "stable" for a Fontan survivor.
I hope this can help, good luck!
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Hi,
I’ve had this procedure and I’m going on 20 this year. From what I’ve seen first handed is that everything is slower (in a sense of walking) I didn’t walk until my scars healed up.
I’ve had this procedure and I’m going on 20 this year. From what I’ve seen first handed is that everything is slower (in a sense of walking) I didn’t walk until my scars healed up.
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I came across this site when I entered the question “how long do Fontan patients live”. I’ve been curious because I myself have had a Fontan almost 30 years ago. At the time it was called a modified Fontan because it was an improved revision of the surgery. I was 12 years old and now I am 42. I have had many years of no complications though it is only in the recent past (two years ago) that I suffered a blood clot. I am now on a blood thinner.
I am surprised to hear of people having children as I was told that it would not be a good idea for me. I may have a more complicated condition than others which is called tricuspid atresia. My tricuspid valve did not form properly and is not functional at all and my right ventricle did not develop. Fontan surgeries are performed for a variety of heart conditions so I bet the success rate has a lot to do with the defect. The results can vary with each person as the body can have unique ways of coping with the illness before surgery and even before birth.
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