Newborn TOF/OA
Discussion
Yesterday morning my wife gave birth to a pair of bouncing boys. It rapidly became apparent that twin #2 had some complications and it was diagnosed as Tracheo-Oesophageal Fistula. We had an ambulance ride to Brighton County where they could investigate further. The operation is scheduled for this afternoon and we are cautiously optimistic that common associated problems are not apparent.
Have any of the PH parents experienced this? Any advice or words of wisdom about what to expect?
Thanks
Have any of the PH parents experienced this? Any advice or words of wisdom about what to expect?
Thanks
Thanks all. He's being operated on now.
Zod - the fistula is part of it & apparently most easily fixed. The atresia (oesophagus and stomach are not connected) is the bulk of the operation and where any complications are likely to occur.
It seems that it isn't rare (1 in every 4000 newborns) but I don't know of anyone who has had it.
Zod - the fistula is part of it & apparently most easily fixed. The atresia (oesophagus and stomach are not connected) is the bulk of the operation and where any complications are likely to occur.
It seems that it isn't rare (1 in every 4000 newborns) but I don't know of anyone who has had it.
bga said:
Thanks all. He's being operated on now.
Zod - the fistula is part of it & apparently most easily fixed. The atresia (oesophagus and stomach are not connected) is the bulk of the operation and where any complications are likely to occur.
It seems that it isn't rare (1 in every 4000 newborns) but I don't know of anyone who has had it.
Good luck to him and you. Zod - the fistula is part of it & apparently most easily fixed. The atresia (oesophagus and stomach are not connected) is the bulk of the operation and where any complications are likely to occur.
It seems that it isn't rare (1 in every 4000 newborns) but I don't know of anyone who has had it.
Congratulations on the birth of your boys. Did you know you were set to have the makings of a 5-a-side team or was it a surprise?
Sorry for picking this up late, we've been overrun with extreme prems and the unit is heaving, nights haven't had the quiet times recently.
Its pleasing to hear that your son isn't showing signs of any associations. Commonly neonatal teams will send off a microarray and karyotype (you will have been consented for this) looking for genetic associations that include trisomy 13 (Patau's), trisomy 18 (Edwards) or VACTERL assocations (any vertebral anomalies, anal atresia, cardiac malformations, TOF, renal or limb problems). Both trisomy 13 & 18 would be obviously abnormal and both are very nasty with very poor prognosis. VACTERl associations can be much harder to spot - we're currently running an audit looking at the quality of our investigations and referrals in these patients as often x-ray reports and renal USS can be left out or missed. In order to do this, your neonatal team might perform an echo, renal ultrasound, abdominal xray or spinal x-ray (sometimes vertebral reports can be based on chest x-ray findings).
You are correct in saying that the problems we see post op are associated with the oesophageal atresia (OA) and not the TOF. We've had two on our unit recently with complications following OA repairs - stricturing is one of the big problems with associated symptoms/problems such as choking episodes/incoordination episodes.
I'm not a surgeon (I'm a NICU doc), but I understand there are a number of different ways they can actually perform the repairs. Post-op, the NICU team will be heavily involved with TPN feeds to ensure nutrition prior to your boy being established on full feeds (is mum planning to breast feed? If so, make sure she is expressing and getting the milk into the lad via NGT/bottle - whatever the team see fit). Immediate complications post surgery are unvommon, but anastomotic strictures (as mentioned before) and associated gastro-oesophageal reflux can be problematic but do respond well to dilatation and medications. Your boy may have a typical 'TOF cough' - essentially caused by tracheomalacia - this improves with time but might make him sound like he has a really really bad upper respiratory tract infection. The team might stagger the introduction of feeds as well.
Overall, outcome is good, so BE POSITIVE!! The nurses will help answer any day to day questions you have and the doctors will shoot around in 5 minutes muttering stuff before leaving you wondering what happened on the round - try to be present while the team see your child on the morning rounds as it helps deal with any communication issues and is much easier to discuss problems.
Hope this gives you a bit more info. Fingers crossed he has an uneventful post-op period and that it all goes well for you and your new family!
Sorry for picking this up late, we've been overrun with extreme prems and the unit is heaving, nights haven't had the quiet times recently.
Its pleasing to hear that your son isn't showing signs of any associations. Commonly neonatal teams will send off a microarray and karyotype (you will have been consented for this) looking for genetic associations that include trisomy 13 (Patau's), trisomy 18 (Edwards) or VACTERL assocations (any vertebral anomalies, anal atresia, cardiac malformations, TOF, renal or limb problems). Both trisomy 13 & 18 would be obviously abnormal and both are very nasty with very poor prognosis. VACTERl associations can be much harder to spot - we're currently running an audit looking at the quality of our investigations and referrals in these patients as often x-ray reports and renal USS can be left out or missed. In order to do this, your neonatal team might perform an echo, renal ultrasound, abdominal xray or spinal x-ray (sometimes vertebral reports can be based on chest x-ray findings).
You are correct in saying that the problems we see post op are associated with the oesophageal atresia (OA) and not the TOF. We've had two on our unit recently with complications following OA repairs - stricturing is one of the big problems with associated symptoms/problems such as choking episodes/incoordination episodes.
I'm not a surgeon (I'm a NICU doc), but I understand there are a number of different ways they can actually perform the repairs. Post-op, the NICU team will be heavily involved with TPN feeds to ensure nutrition prior to your boy being established on full feeds (is mum planning to breast feed? If so, make sure she is expressing and getting the milk into the lad via NGT/bottle - whatever the team see fit). Immediate complications post surgery are unvommon, but anastomotic strictures (as mentioned before) and associated gastro-oesophageal reflux can be problematic but do respond well to dilatation and medications. Your boy may have a typical 'TOF cough' - essentially caused by tracheomalacia - this improves with time but might make him sound like he has a really really bad upper respiratory tract infection. The team might stagger the introduction of feeds as well.
Overall, outcome is good, so BE POSITIVE!! The nurses will help answer any day to day questions you have and the doctors will shoot around in 5 minutes muttering stuff before leaving you wondering what happened on the round - try to be present while the team see your child on the morning rounds as it helps deal with any communication issues and is much easier to discuss problems.
Hope this gives you a bit more info. Fingers crossed he has an uneventful post-op period and that it all goes well for you and your new family!
[quote=HughS47]
Hugh, thank you so much for taking the time to reply. Only so much sinks in when I am on the ward despite the medical teams being really helpful and patient. Being able to digest it in the comfort of home is comforting
We've been through VACTERL and apparently there are no concerns about Edwards and Patau's. One thing that hasn't been mentioned so far is getting some of mums milk into him so I'll ask about it when I go in this morning in time for the rounds. My wife is breast feeding his brother so expressing shouldn't be a problem.
It was rather a surprise to find out there were 2. There is no history in the family and my wife had been off clomifene for about 18 months. I have to say I prefer the association with a 5-a-side team than the comments by some nearest and dearest who assume they will be a pair of props...I'm not sure what they are suggesting there.
Thanks again, it is appreciated.
Hugh, thank you so much for taking the time to reply. Only so much sinks in when I am on the ward despite the medical teams being really helpful and patient. Being able to digest it in the comfort of home is comforting
We've been through VACTERL and apparently there are no concerns about Edwards and Patau's. One thing that hasn't been mentioned so far is getting some of mums milk into him so I'll ask about it when I go in this morning in time for the rounds. My wife is breast feeding his brother so expressing shouldn't be a problem.
It was rather a surprise to find out there were 2. There is no history in the family and my wife had been off clomifene for about 18 months. I have to say I prefer the association with a 5-a-side team than the comments by some nearest and dearest who assume they will be a pair of props...I'm not sure what they are suggesting there.
Thanks again, it is appreciated.
numtumfutunch said:
Its probably quite a big deal and I can understand how difficult it must be for you all
A friend of mine had this when he was born too
Hes a big f
ker now and really not the kind of person youd want to mess with
Good luck to your little 'un
Being a big lump is in their genes so that's good news, thanks. A friend of mine had this when he was born too
Hes a big f
ker now and really not the kind of person youd want to mess withGood luck to your little 'un
He's improving thanks. Spending a week in the intensive care baby unit puts things into perspective. Seeing babies born at 24 weeks & weighing 9oz is heart wrenching, as are the human stories behind many of them.
The operation was a success (we had the contrast scan today to check for leaks) and he's getting mums milk by mouth and through his nasal tube. To add a bit more fun into the mix his brother had to have 36h on a bili bed for jaundice. Fortunately the hospital worked out a way to have them together in ICBU before they both transferred to the high dependency ward.
Next steps are to finish the scans/ID or rule out further complications and get him onto oral feeds before the tube is removed.
I'm looking forward to getting my boy home!
The operation was a success (we had the contrast scan today to check for leaks) and he's getting mums milk by mouth and through his nasal tube. To add a bit more fun into the mix his brother had to have 36h on a bili bed for jaundice. Fortunately the hospital worked out a way to have them together in ICBU before they both transferred to the high dependency ward.
Next steps are to finish the scans/ID or rule out further complications and get him onto oral feeds before the tube is removed.
I'm looking forward to getting my boy home!
So 2 weeks after the boys were born we are home. Thanks for all the words of support & advice.
Thomas is in good spirits and feeding well. He can drain a bottle of mum's milk as quickly as his twin but is a bit perplexed when presented with a boob though I am pretty sure that will come soon. His pre-discharge heart, spine and kidney physiology scans have come back clear of problems which is good and we are now very much looking forward to getting to know the little fella properly.
The care provided by the teams in Brighton's Trevor Mann unit and Royal Alexandra has been excellent and I hope they enjoy their cakes!
Thomas is in good spirits and feeding well. He can drain a bottle of mum's milk as quickly as his twin but is a bit perplexed when presented with a boob though I am pretty sure that will come soon. His pre-discharge heart, spine and kidney physiology scans have come back clear of problems which is good and we are now very much looking forward to getting to know the little fella properly.
The care provided by the teams in Brighton's Trevor Mann unit and Royal Alexandra has been excellent and I hope they enjoy their cakes!
Glad to hear all is ok now and home safely!
My younger sister was diagnosed with this as a baby and had to have the operation, she's now 21 and well! (Although a very fussy eater! )
She did have a couple of episodes of choking when she was younger, but fine now, they advice to eat slowly and chew food thoroughly.
Good luck
My younger sister was diagnosed with this as a baby and had to have the operation, she's now 21 and well! (Although a very fussy eater! )
She did have a couple of episodes of choking when she was younger, but fine now, they advice to eat slowly and chew food thoroughly.
Good luck
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