Possible Tracheoesophageal Fistula and second baby in NICU

[Lolly2080]

Hi
I'm not entirely sure why I'm writing this but I guess I'm feeling a bit lost and scared and was wondering if anyone out there can help. I'm 30 weeks pregnant with my second baby. I have been for a number of scans at the fetal medicine unit because they say the stomach is looking small. This may indicate that the baby has tracheoesophageal fistula, a leak from his oesophagus into his windpipe. Everything else looks great on the scan but they said they can't rule out this condition. If he does have this he will need surgery after he is born and to go into NICU. My first son was born by emergency c section after oxygen deprivation during labour and then was in NICU for a week. It was so traumatic I suffered from PTSD afterwards. I was really hoping for a "normal" experience with this baby and feeling so upset that I might have to go through having a newborn on intensive care again and go be separated from my baby again. I feel I know very little about the operation that may be needed. Just wondering if there is anybody else who has been through this and can offer any insight/advice? Thank you x

I haven’t been through it but I have looked after babies with TOF. The operation depends a bit on whether there is a big gap in the oesophagus or not - if the gap is small, it can be joined up almost straightaway but if the gap is long then babies may need to stay on NICU to grow before they can have the operation to fix everything. Your team should be able to arrange for you to meet the paediatric surgeons to explain further if you think that would be helpful.

I’m sorry to hear about your previous traumatic experiences. Perhaps if the NICU admission is expected this time it might be a bit easier to come to terms with? Again, perhaps ask your team if you could meet the neonatal doctors and nurses and maybe have a tour of the unit before delivery? (If they will let you in covid times...)

I hope all goes well with your little one

Hi, thanks so much for your reply. We're meeting the neonatal doctors in 4 weeks, I feel I have a lot of questions and it will be a long wait but will think about what we want to ask in that time. Yes you're right in a way it's good because we're familiar with NICU and how it works and at least it won't be such a shock this time. Thanks again for your reply

My situation was a bit different but I've done two nicu stays. Like you, my first baby had oxygen deprivation during labour and was in for a month, very touch and go for some of that. It was horrendous. Second time round, baby unexpectedly had breathing difficulties and ended up staying in nicu for a week. It was night and day, it's so much easier having been through it once before and knowing the ropes. Plus as pp says, if it's something you know is coming I'd imagine it'll be a lot less traumatic, you can prepare yourself for it. It's still not fun, and I did find myself wondering why I can't just have a baby and take it home like everyone else. But you know you've got what it takes to make it through a nicu stay now!

Just a thought - would you be at the same hospital second time? I went elsewhere for my second, didn't want any reminders of that first birth at all. We obv weren't expecting to be in nicu again but I'm glad it wasn't the same one, I think I would've found it too overwhelming being back there again. On the other hand, you might prefer it to have some familiar nurses around you etc.

Thank you for your reply, sorry I only seem to have seen it now. I'm so sorry you went through that twice. I know what you mean about wondering why you can't just take the baby home! Hope you are all doing well now. It's a good point but it's one of the best hospitals in the country so I feel safe there. Thanks for your support, my planned c section is on Wednesday 🤞 will all be ok xx

Ah, I just saw your reply. So glad you're at a great hospital and I really hope all went well yesterday. Please give an update if you feel like it!

Hi OP. I just wanted to reply to let you know that I was born with this (TOF). Now 35 and healthy! Wishing you all the best for your little one and I'll happily try and answer any questions you might have.

Thank you for your replies. Our gorgeous boy was born yesterday and no operation was needed ☺️ we are delighted and feeling very lucky. Thanks for the support x

Congratulations! How wonderful 💕