Esophageal Atresia

[Lizabeth24]

Hi my son was born on the 28th September 2020. We found out that he had esophageal atresia he had emergency surgery the next day he’s came on good since then. He’s only 3 weeks old now and still in hospital he’s struggling with feeding. I was looking to see if there was anyone on here with a similar story to mine. Thank you. X

Hi @Lizabeth24. Congratulations on your little boy! I wanted to reply to your message to share that I was born with a Tracheo-Oesophageal Fistula (TOF), which i think, is a similar rare birth defect. I had successful surgery as a new born to correct this. Wishing you well with your little one 💗

Congratulations on your little boy.
I don't have direct experience of this, but a close friend's DD was born with TOF/OA. They weren't expecting it before she arrived and she had similar surgery shortly afterwards. She is now a healthy happy teenager.
Obviously this isn't first hand experience, but I just wanted to give you a positive story. My friend found the TOFs society (I think they have a Facebook group) enormously supportive and helpful.
Being in NICU is hard. Be very gentle with yourself, you will get there. My friend's DD had more respiratory illnesses than average as a baby, and some hospitalisations in young childhood with bits of food getting stuck in her oesophagus, but slowly grew out of much of it and it has been years since she has had any related problems.
Hope you get your little boy home soon. Take care of yourself.

Thank you for your reply’s it’s really good hearing positive stories just now as I’m just sat thinking the worst especially at this time of night. It’s all still quite new to me and I’m learning more about it every day. I’ve never heard of it before until my son was born. I also have a 17 month old daughter at home who I’m trying to juggle my time with both of them just now I’m finding it really hard and also feeling really guilty about leaving her to go to hospital then I’m feeling guilty for leaving my son in hospital to go get my daughter. He’s been doing good today he’s finished a few full bottles but sometimes he gets really overwhelmed and he panics so we stop and put it down his tube. He has his good days and bad but he’s doing good for being only 3 weeks old. I just hope we get him home soon.

www.tofs.org.uk/home.aspx
Lots of information and support on here. It's been 35 years since I was born a TOF, but I am healthy and all good now. Similarly, to the other poster, I did have quite a few hospital admissions growing up, but then seemed to grow out of it. The only remaining indicators really are the scars from surgery, a distinctive TOF cough (only if I get a cold) and I am quite a slow eater. Sending love to you all. And please let me know if I can answer any questions. I'll certainly try my best or can ask my mum for her experience. Look after yourself.