My daughter is 5 weeks and has TOF. She's getting a heart surgery next month and I'm scared

I don't have much information for you, but I know how scary it can be, my husband was born with ToF and has had 5 open heart surgeries. His last was in February of last year and he is 21 years old. I've been by his side since we were kids and I just want you to know that your girl has a wonderful chance of a beautiful recovery with the technology and education that doctors have today of this condition. Just remember to collect any info you can from her doctors and ask tons of questions. Best of luck to you and your family.

My oldest is turning 20 years ild this year and he had TOF when he was a baby, he had open heart surgery at 7mouths old. It is hard watching your baby go through it but every day I am so proud of my son and how well he is doing

My son turns 14 next month and god I remember that feeling when he first had his operation at 3 days old. I remember the worry of not knowing how it was gonna go and also the outcome of it. But my son is so heathly and active it is shocking he is into motor bikes loves swimming. there is times when I look at him and get a little glimpse of him in hospital that it takes my breath away. So try think positive the doctors are amazin at what they do. X

How is your little girl doing? I am 46 now and have TOF

How is your little girl doing? I am 46 now and have TOF

Im 31 and was born with TOF. I have a 1 little girl myself and was lucky she didnt follow me and having it too. My heart goes out to you, but please remember that you are giving her the best chance of a happy fulfilling life. Im glad my parents signed the papers each time i had a operation, else i wouldnt be here to talk to you now xx

My name is cory. Im now 27 years old. I was diagnosed with tetrology of fallot when i was a baby with my first surgery only at a day old, i was diagnosed with TOF, a trunk aorta, and a hole. TOF was fixed the hole was left as is. I had my next surgery at 16 where the hole was repaird but also my pulmanary valve was replaced with a pig valve i lived my life from an infant till 16 with arythmia caused from the TOF this stunted certian things in my life but has never stopped me from doing anything. I was told at 16 that i would have another surgery replacing my pig valve with another but this was not true now ten years later with a cardiologist appointment once every year and having my last check only last mont im clear for another 2 years. Keep your child healthy motivated and comforted through out there lives and success through every bump his heart makes and puts him through will prove to only be more motivation to them to treat themselves as if they have no condition and no limits because there really are none i surprisingly surpassed many of my own friends in sports weight lifting and running and still do.

Your daughter will do well as long as you do just as well by her side. My mother got me throuhh many many scary triumphs and if it wasnt for her im not sure how well i would of done througb my life my mother was my calm my laughter and my strength through out my life with a heart condition.

You got this, and i wish yoir daugher all the best.

Khamilla goes for surgery May 9th. She's getting her pulmonary artery repaired in mulitple places and the hole is getting patched over. She might also need a valve replacement depending on how it is after the repair is done.

My uncle, who was my doctor, made the initial diagnosis of TOF in 1960, I was born in 1959 and he found out what my problem was in early 1960.  Back then they did not perform the surgery until the child was older if at all possible since the surgery was still new as such and there were few doctors who knew how to perform it.  I ended up having my surgery in 1969, at 9 1/2 years old.  I am now 56 with two grown children.  The surgery back in 1969 took 12 hours, with 3 different sets of surgicial teams taking turns, as the surgery is complicated, or at that time was.  I was in the hospital for 2 months, in ICU for over a month and a half.  I remember they would not allow my parents to see me but for 5 minutes twice a week as they were afraid of germs.  I chuckle to myself now when I hear of the surgery taking maybe 6 hours if that, and the patients are maybe in the hospital a week or shorter.  My cardologist released me from his care when I turned 16, I do watch when I get infections, go to doctor for antibotics etc.  Same as a dentist, antibotics before dental work, other than that I am as normal as can be.  The surgery did change my life, it gave me life!  Let your kids be kids!  They will know when they are tired, when they need to rest.  Don't stop them from exploring anyway that they can.  That is what I would say to any parent going through a diagnosis of a child with TOF.  Gretchen 08, it is scary, I won't deny that.  Your daughter is young, this type of surgery has been done for years upon years.  The doctors know what to do, as a parent it is hard to let your child go, be out of sight, but this is something that will change her life and improve it beyond belief, believe me when I say this!  My prayers will be with you and your daughter on May 9th.  Give faith to the doctors and nurses