Looking for advice - Tetralogy of Fallot

[Proudmummyofboys13]

Hello all, I am a proud mummy to Teddy, born just 7 weeks ago, with a tetralogy of Fallot congenital heart defect detected antenatally. I was hoping to connect with anyone that may have had experience with this corrective surgery at Evalina Children’s Hospital (St Thomas’, London). Thank you in advance xx

[Milkfairy Heart Star]

Hello,Welcome to the forum and congratulations on the birth of your baby, Teddy.

We tend to be more mature heart patients here on the forum.

I suggest you contact the Childrens Heart Federation, who hopefully will be able to help you.

chfed.org.uk/

[Proudmummyofboys13 in reply to Milkfairy]

Thank you ever so much xx

[Redsea]

Hello, proud mummy and congratulations on the birth of Teddy. Just to let you know the Children's Heart Federation will be able to help you and support you. You were lucky your baby was diagnosed prenatally and you could prepare yourselves for the road ahead. It is 20 years ago today since my son had open heart surgery at Alder Hey hospital in Liverpool. He was born 21 September 1990, by c section , I knew something was wrong as soon as I saw him, his fingers, toes and lips were blue, but no , I was over anxious, and looking for things as I was a paediatric nurse! Won't go into detail but after 10 years he had successful heart surgery, and he has never looked back and he's one amazing young man! You will be stressed, anxious, scared but talk about how your feeling don't bottle it up, ask questions but most of all love your baby with all your heart and good luck, if you need to talk I will reply. Now iam the one with heart issues, heart attacks, stents heart disease. Thinking of you.x

[Proudmummyofboys13 in reply to Redsea]

Wow thank you so much for your reply oh indeed I am eternally grateful for the diagnosis, as you said it has given us time to prepare ourselves. Teddy is so loved already, especially by his big brother! He is a gorgeous little man and doing very well so far. The operation is looming and I guess it’s harder on us emotionally than poor Teddy who knows no different. The thought of what is about to come, Sits in the pit of my stomach. Congratulations to you & your son & so Sorry to learn of your diagnosis. I hope you too have the wonderful support here and around you xx

[Jacey15]

Hi and congratulations on the safe arrival of baby Teddy. A friend of mine's first son was born with fallots which was only spotted when he was born. He had surgery at 9 months at GOSH and after a couple of years had annual appointments only just to check he was still okay. He has had no problems since, is very active and has always participated in lots of sports etc. He is 25 now and just got engaged. I know a fallots diagnosis can be pretty scarey but the surgery makes such a difference and enables a normal life. Hope the children's heart Foundation can give you more specifics re St Thomas's x

[Proudmummyofboys13 in reply to Jacey15]

Thank you so much for taking the time to reply about your friend Jacey it makes a fabulous read. Congratulations to the newly engaged too x