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

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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

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

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