Please someone shed some light on my situation. I'm so scared of losing my babygirl
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
Thank you for sharing. Im doing this for her. I want her to be healthy and not at risk of anything. I'm so attached to her. It kills me she has to go through this but this is all i can do to help her. She goes for surgery May 9th!
I will have my fingers and toes crossed for you. Just think how far medicine has come. It was still quite new 30 years ago, but now the surgeons are so experienced in what they do the medicine and technology has helped things too. Shes in good hands, and remember she and you are not alone in it all x
Thank you so much. I'll let you know how it goes.
Hi Gretchen. My son had TOF repair surgery at 10 months. He is now almost 9. He plays soccer and oztag, is almost the youngest in the grade but doing ok at school, he eats like a horse & loves Pokemon. Your time will come where you too can look back on this scary time and provide reassurance to someone else. You've got this, and the doctors have it too xox
Keep us posted
Sarah
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.
Wow your words really gave me hope. I will always be scared for my baby but I will never show her that. I'm ready to be her backbone for whatever this journey brings. Thank you so much for sharing. It really gives me motivation now that the surgery is days away. ❤
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
❤❤❤ thank you. I have faith everything will go as expected or even better. I've never had to experience anything of this magnitude. I love her so much and I will do anything I can to make it better when it's all over. Thank you for your words. This support group has honestly made me feel loads better. I'm just holding my baby, counting down the days left till her surgery. The rest is in God's hands.
Have you by any chance ever seen the movie "Something The Lord Made", it was a HBO movie, starring Alan Rickman? It tells the story of the doctor and the gentleman who created the surgery for FOT children, blue babies. I believe we, as a FOT child, are put on this earth for a reason. Our lives/stories may be short, they may be long, but there is a reason! Mine was to be a blue baby back in 1959, have the surgery in 1969, have a normal teenage life, become a parent of 2 autistic children, get a divorce after 20 years. My story is still be written so not sure how it will end, your daughter's story is as well being written, she too will have many chapters ahead I'm sure. The doctors may never know what causes it or how to prevent it but as the movie title states, it's "Something The Lord Made", that is something you should always be very proud of as a parent and your daughter will be proud of it too as she grows!
Please keep me informed as to how she is doing, my thoughts are with you, your daughter, and your family!
Hi, My daughter also have the same heart condition. She was alao diagnosed with TOF, shes now 2weeks old. I just can't help but cry the first time I was informed about her condition. The Pedia Cardio said that shes still a "pink" baby since she still appears as a healthy normal baby but later on she will be "blue". Im sacred as you are since my baby also need to undergo heart surgery. We were advised by the pedia cardio to go back to him for check up after 3mos.
Please update us about the surgery of your baby. I will also pray for her successful surgery.
My daughter just got the surgery on the 9th of May. She was healthy right up to her surgery date. I breastfed to make sure her weight was up. There were some unexpected complications but she's in recovery now. I'm still living the nightmare but thank the Lord she's recovering well. I'm here if you need to talk.
Thank God for your daughter's successful operation. Im also praying for a successful one for my daughter too when that time comes. We will go back to the pedia cardio after 3mos and we'll see what will be done next. Honestly, im really scared as a first time mom. I want the best for my baby. Im lifting everything to God. Will pray for the fast recovery of your baby.