Tetralogy of Fallot

Tina - posted on 11/18/2009 ( 5 moms have responded )

5

7

0

Hi I am new to this group and was wondering if any of you had children with tet? My son was diagnosed with Tetralogy of Fallot right after birth. He had his first open heart surgery at 41/2 months and will have to have another in the future. I would love to talk to other moms about their experience and be of help to anyone I may. Thanks.

5 Comments

View replies by

Seaneen - posted on 01/17/2013

2

0

0

Hi, I am currently 35 weeks pregnant and my baby boy has been diagnosed with tof with vsd. We were devastated and don't know what to expect. I have had an amniocentesis which came back normal. Does anyone know how likely it will be for our little one to have any other defects? We have been advised by our cardiologist he will not need surgery until he is 6 months old. Is this the normal time scale for surgery? Any advice would be great. Thanks x

Kylie - posted on 04/21/2012

4

0

0

Hi Joanna, my little Lochie has PA he's 8 months old now and home and doing fabulous! He had some problems when he was first born due to also having CHARGE syndrome and spent the first 4 months in hospital with breathing issues related to that. He had a rough start to life and has had 4 cardiac surgeries now. He had the typical Pulmonary to Aortic shunt at 4 days old (Central Shunt) which most PA babies have. He had an infection so had to go back for a wound debribement and to wrap his shunt slightly to make it a little smaller. He's since also had his full repair and then another surgery to enlarge his Pulmonary Arteries as he has some sections of narrowing. It is still proving to be a problem and will most likely undergo a catheter procedure this year but hopefully that will do the trick. In terms of surgeries in the future...Lochie did not have conduit placed in his full repair which has the benefit of not having to be replaced as he grows but instead they stretched his PA's directly to his right ventricle and consequently he has no Pulmonary Valve so he will need one put in at some stage. But providing we get on top of his Pulmonary Arteries that will be the only surgery on the horizon :) :). He is so so so well now though, home and living a normal baby life and thriving. The first stage once they are born feels like it is never going to end but take heart in knowing it does all settle down and you do end up with a beautiful baby at home before you know it xox

User - posted on 04/21/2012

3

0

0

Can anyone give updates? I recently found out at 20 weeks my son has TOF with PA. I am scared and would like to read of stories with hope.

Kylie - posted on 04/16/2011

4

0

0

I'm 22 weeks pregnant with a little baby boy diagnosed with TOF with pulomary atresia. We have a beautiful little 3yr old girl with no health problems and were so excited to find out we were having a little boy to be shook by the news he has a CHD....very scary times ahead fingers crossed for a bright future however x x

Raili - posted on 02/25/2010

1

14

1

My son was also born with tet. He had his first surgery at about 5 months and is doing great! He is now almost 5 and is only having check-ups with his cardiologist once a year. They don't know if/when he would need another surgery...but his next appointment is coming up, so I'll see if there have been any changes.

Join Circle of Moms

Sign up for Circle of Moms and be a part of this community! Membership is just one click away.

Join Circle of Moms