Born with CHD

[CHDdan]

Hi! I am a mother of a boy who is now 5 years old(born with tetralogy of fallot). Our journey with my only son's heart condition is very challenging which leads me to be searching of communities like this. I hope to learn from you all and also to be an encouragement for those who are in a situation like us.

[clarehealsworldwide]

Hallo and welcome to the forum. I'm sorry to read of your son's condition and wish you both all the very best in the future. Clare

[CHDdan in reply to clarehealsworldwide]

Hi Clare! thanks for that warm wish. Yes, I must admit its difficult but then I have to learn to accept our situation and strive as much as I can.

[Nanny72]

My granddaughter had transposition, pulmonary stenosis and

VSD. Her left ventricle did not grow. After many surgeries she eventually had Fontan circulation at 13. This means she only has one ventricle. She is now 23 and is our miracle as I am sure your son is.

Little Hearts Matter and the Children's Heart Foundation are great support.

[CHDdan in reply to Nanny72]

Hi! I dont know how to ask help but this year we need to provide a great amount for the total correction, I always tried searching but no replies. A good friend even started to raise fund online but still has not reach the amount we need.

[gal4God]

I was no with a heart condition and at 5 I stuggled to understand my heart condition so ur son needs to talk in an age apporate way. If u can’t speak to his teacher or cardiologist or gp.

[CHDdan]

I understand. Thank you for your kind advice!

[izzyg43]

Hi there! Just to let you know was born with the same heart problem as your son. I am now on my 50's and still doing not to bad. Obviously it is a lifelong condition and it has to be monitored regularly. Having this today should be much better for you and your son as there is a lot more help and information for you both. I have led a pretty normal life so hopefully so will your son. there is a booklet you can download from the bhf site all about tetralogy of fallot. My thoughts are with you and I know it's hard but a good positive outlook from my mother was really helpful and I had little restrictions when growing up. If you need to know anything or feel like talking I am here.

Izzyg43

[CHDdan in reply to izzyg43]

Hi Izzyg43! thanks for sharing your experience with me. Its been 5 yrs. for us and still thriving especially in finances. I am keeping everything positive for my son. For now the pedia cardiologist told us that we can still wait for the major surgery (not just due to lack of finances) but my son is still able to function normally(not unless of course he did a tiring activity). But then reality is always striking my busy mind. Anyway, I appreciate your message and would want to hear more from you.

[TOFmum10]

Hi I am a mum to a beautiful boy who was born with Tetralogy of Fallot, he’s nearly 2 and has undergone open heart at 10 months. He’s thriving every day, but I’m concerned about long term prognosis as he requires more surgery in the coming years. Do you find your son is able to do normal things or are there limits? It’s not a condition I had ever heard of but have managed it well so far. I know there are good days and bad but I struggle not having anyone who knows or understands how nerve wracking it is at times.

[CHDdan in reply to TOFmum10]

Hi! TOFmum10! yes I emphatize with how you are doing with your son. It is a fact we have to face in our daily lives. I thought no one understands me and feel how I feel, now here we are sharing almost the same challenge. My husband and I make sure that we treat our son like the rest of other children, as the doctor always reminds us to treat him normally, let him play, run, jump, eat every kind of food. We find it fulfilling though nerve wracking at times. Its great to have read your message! I hope to hear more from you so we can share our thoughts and might help some of our experiences.

[fallots]

Hi i am now 55yrs old and was also born with fallots. I had my surgery when i was 3yrs old. I would just like to give you hope for your son. I have lived a perfectly normal life and even had a son myself. My fallots has never stopped me doing sports or anything at all. In fact i feel i do.more than people without heart condition. Good luck to you all for your future