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Baby with Tracheo-oesophageal fistula on Tracheostomy and Gastrostomy

Resolved Question:

We are staying in Mumbai, My baby has undergone hospitalisation many time since birth. She has been placed with Tracheostomy & Gastronomy tube due to which mobility of the baby is not possible. We are here consulting with renowned ENT Surgeon & Paediatric Doctors of Mumbai & We had been told that the aspiration can be due to poor Co-ordination and Tracheostomy tube placement for long period. Once decannulation is tolerated by baby then the aspiration problem will not persist. Now they have told to wait & concentrate on baby weight gain.
But we want to take 2nd opinion from you , So please suggest proper step to be taken from our end.


Category: ENT Specialist

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Category: ENT Specialist
Dr. Sunil Jalan is online now

Expert:  Dr. Sunil Jalan replied 4 Days.

Hello,


Thank you for using Ask a Doctor Service from Doctor Spring.

I can understand your problem, and will try to help you the best possible

Let me explain the disease first à

Your baby had congenital tacheo-oesophageal fistula (abnormal connection between breathing tube and food pipe since birth).

Due to this abnormal connection milk was entering in breathing tube à lungs, after birth. So baby had breathing difficulty.

So a bypass for food was made (gastrostomy).

Tracheostomy was done because baby had serious lung infection and was kept on ventilator for long period.

Following which repair of trachea- oesophageal fistula done

At present your concern are à

1. growth of baby : poor weight gain is very common in children with tracheo-oesophageal fistula, (in case of your baby, she is hospitalised for very long period ), but it will improve , you should continue to follow instruction given by child specialist.

2. tracheostomy tube – children when they are on tracheostomy tube for long duration they become dependent for it. In this situation graded decannaulation can done (To put smaller tracheostomy tube and then smaller) (from no 5à4.5 à 4 no)

3.gastrostomy à once aspiration improves, than it can be closed.

So as repair of tracheo-oesophageal fistula is done. I think graded decannulaiton of tracheostomy tube can be tried. I hope your child will recover soon.

Hope this helps. Feel free to ask if you have any further queries.


Thank you.


Regards

Dr. Sunil Jalan
MBBS, DLO,MS(ENT), DNB,DAA
Consultant ENT and skull base surgeon

--
Reply from Dr.Ratnakar Kini, Medical Gastroenterologist.

Hi,
Thanks for posting your query.
I am Dr.Ratnakar Kini and I am pleased to assist you.

I went through your daughter's health records. Very unfortunate that she had to suffer this much and undergo so many different surgeries at this tender age.

The discharge summary from Raheja Hospital ( for the admission between 11/06/2013 and 05/07/2013) says that she was operated for tracheo esophageal fistula.

The next discharge summary from the same hospital ( for the admission between 20/07/2013 and 27/07/2013) says that th reason for admission was milk coming out through tracheostaomy tube. This indicates there is a fistula between the foodpipe and trachea. But subsequent tests done did not reveal any such fistula. And attempts to remove the tracheostomy resulted in a drop in oxygen stauration. There was also a history for surgery for severe GER.

I find whatever the doctors have been doing is right. Rmoval of the tubes can be attempted once th baby is able to tolerate it which will happen after it gets good nourishment.

However I would advise you to discuss with her doctor about the long term complications of tracheostomy tube in situ and what can be done for that.

I hope that answers your question.
Let me know if I can assist you further.
Regards,
Dr.Ratnakar Kini


Patient replied :

Thanks for your promt reponse, Whether the aspiration after feeding through mouth will get stopped after tracheostomy decannulation.


Expert:  Dr. Sunil Jalan replied 3 Days.

Hello,

Aspiration is not only because of tracheostomy tube. it depends of effective closure of vocal cord, so this co-ordination of muscle should also improve, but some improvement will be there following decannulation.
At present how is aspiration ,is she taking anything orally or totally on gastrostomy feed??
More detailed opinion can be given by direct endoscopic examination of patient.
Hope this helps. Feel free to ask if you have any further queries.

Thank you.
Regards
Dr. Sunil Jalan


Patient replied :

At present she is on gastronomy feed only, Aspiration is 10-20% if given orally. we are avoiding oral feed to prevent infection in airway or pneumonia.


Expert:  Dr. Sunil Jalan replied 2 Days.

Hello,

Based on your detail and well maintained medical record, I believe that your daughter is getting good medical care.

We should not hurry for gastrostomy closure, as adequate nutrition is very important for her growth. If aspiration is only 10-20%, then it will improve in some time, once it settles fully than only we should start oral feed and should consider gastrostomy closure.

At present graded decannulation of tracheostomy tube can be considered.
if her limb movement is good (when she is lying down if she is moving her hands and legs), then her mobility will become normal in future. this one - two month time of recovery will not affect it.

Wish a speedy recovery for your daughter.
Hope this helps. Feel free to ask if you have any further queries.

Thank you.
Regards
Dr. Sunil Jalan


Dr. Sunil Jalan
Category: ENT Specialist
Experience: 
DAA (Diploma in asthma and allergy) : Christian Medical College, Vellore, 2012
D.N.B (ENT), 2011
Residency - M.S. (Master post graduate degree in otorhinolaryngology),  Christian Medical College, Vellore, 2009
D.L.O. (Diploma in otorhinolaryngology) - Christian Medical College, Vellore, 2007
Medical School - M.B.B.S, S.P. Medical college, Bikaner, 2004
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