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Help My 1-Year-Old Daughter Fight Critical Mid-Gut Disorder

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Updates (28)

I am Ravikumar from Hyderabad. I am writing to you to seek your help for my 1 year old daughter. She has been fighting a battle with medical abnormalities since she was 5 months old. She suffers from a rare disorder of Malrotation with Mid-gut Volvulus with Adhesive Intestinal Obstruction. My baby girl has undergone 4 major surgeries without much success.

She was discharged from the hospital in the month of November 2016 with home TPN. She was treated at home for month and half then she fell in sick. Currently, she is being treated by the Doctors of Rainbow Children’s Hospital at Banjara Hills, Hyderabad.

She is currently on a ventilator. But Doctors are very hopeful about her recovery with aggressive course of treatment. However the treatment requires at least 15-20 lakhs for surgeries, tests, TPN (Total Parental Nutrition) and hospital expenses. I have already spent Rs. 20 lakhs and have exhausted all my loan options. I struggling to keep up with piling bills. Here I am, requesting you all to help me save my little daughter.

With lots of hope,

Ravikumar

Lakshmi Maanvi's medical summary report

Out of Ventilator and shifted to ward

Helping her to gain weight and body mass with the TPN

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27th August 2019

Dear Supporters,

Once again I thank each and everyone for extending your support for my child's Mid-Gut disorder problem. As you all know she under went for 5 surgeries and its been more than 2 years for now after 5th surgery of Bishop-Loop ileostomy/Stoma (means one edge of the Large Intestine kept out with a bag to collect stools on regular basis and protect it from outer infections), we have been maintaining it and taking care of the clinical process at home with regular followup visits to Gastroenterologist and Surgeon.

Next step is to do another surgery to close the stoma; however, we are not able to take a decision now as she is slowly started recovering now. Though she is 3 years 7 months old now but still she looks like below 1 year kid. Per Neurologist there is a huge delay in the development due to lack of nutrition and hospitalization for long period (more than a year).

Now i am trying to manage all medical expenses with my earnings; still holding the further surgery part as doctors not able to give any guarantee and may or may not see the re-occurrence of the problem due to previous diagnosis. So, we are not able to take risk at this time. We are at-least quite happy that she is now able to recognize us and hopefully she will be bit more fit though it may take longer time than usual.

We would like to wait for few more months on her growth and other behavior and then think about next surgery part. Once again thank you all and will share you all with the further updates with development process.

Regards,
Ravi. V

10th December 2018

Hello Everyone,

I would like to share an update with you all regarding my daughter's health/recovery, she gained about 2-3 kgs within in this 2 years and we are bit happy to see her in this condition when compared to the worst situation she has been through. However, her health condition is not stable always and doctors are not much satisfied with the stoma (Ileostomy).

Per recent visit to the doctors need to hold on for another 4-6 months for further surgery because still they see there is a dis-motility issue and stools are not passing through Anus. Also they huge developmental delay. They have recommended for Neurologist, speech and physiotherapy consultations.

We will meet the Neurologist in the month of Feb'2019 for further neuro related diagnostics.

Thanks again,
Ravi

12th July 2018

Dear supporters,

My daughter is bit doing well from the past few months. During our last visit to the hospital Doctors confirmed that her intestines are not yet recovered from dis-motility we need to wait for another year or so to re-attempt for Stoma Closure.

Due to long usage of TPN they have observed one side effect (Which they have expected) so far that is her Eye Ball movement is not moving to the both ends and caused Squint, which requires surgery to correct the Squint for her eyes; however, we are holding it off for now.

We want her to be completely recovered from the main disease then we will proceed with the side effects part. Hopefully, she will not develop any other side effects.

Thanks again for your support and prayers.

Regards,
Ravi