Little did the two Lambani labourers Raju and Bebi Bai realize the long walk awaiting them when their first child was born. They named her Ashwini after the 1st star of the lunar calendar.
While she was the bundle of joy, being the first child for the parents they realised something was wrong with her, early in life.
Ashwini could never seem to control her passage of urine, she appeared to dribble urine all the time.
Ashwini had a problem called “female epispadias”; in this condition the female urine tube does not develop well and becomes short and the mechanisms to control urine are also not well developed. This results in the child leaking urine constantly.
The life of a child who constantly leaks and smells of urine is not one which attracts any positive attention in rural India. The stigma of “smelling bad” and constantly being “wet” plagued Ashwini too.
The worried parents sought care from local doctors till finally at the tender age of 6 months she underwent her first surgery to attempt correction of this problem in Sangli, Maharashtra. The surgery did not help solve her problem; epispadias is not an easy defect to correct. It sometimes requires multiple surgeries to allow the child to void, if at all – from the normal place.
Raju and Bebi decided to accept the cruel deal dealt to them and their child, the wheel of life never stops.
Ashwini continued to grow older, “smelling bad”, “wet”; she has never been schooled even though the parents wanted to send her to one. When she was finally sent to us through one of our colleagues who hails from the same region, she was 6 years old. She had never ever passed urine normally.
Her parents being daily wage labourers neither had the savings nor the help of relatives for the extensive evaluation and surgery required for correcting this condition.
The child was seen by us in August 2017, she underwent evaluation and a tentative plan was discussed with the parents. In February 2018 they returned and after multiple long sessions of discussion between the operating doctors and the mother, father, grandmother and grand father the final surgical plan was drawn up.
We had decided that Ashwini would undergo a long, complex single stage surgery at the end of which she would “not” pass urine from the natural passage. Instead she would have a small opening created at the umbilicus from which her mother and later Ashwini herself could put in a tube and empty the bladder. This would avoid multiple surgeries, would allow both the parents to get back to their daily work, get Ashwini to be “dry” from the next day of surgery.
In what then turned out to be an arduous time for Ashwini , the parents, our doctors, nurses and all the support staff; she underwent a 6 hour surgery. The bladder being small was artificially made larger by using a bit of her intestine, the original opening into her urine passage was closed, a new opening was made into her umbilicus. She stayed for a week in the ICU and gradually recovered from the stress of surgery; all the while monitored by a team of doctors in the ICU, her surgeons, paediatrician, dietician, specialised nurses till she was fit to move into the ward.
We all have managed sick children at home and realize how trying the times can be, and here was a child who had undergone a long and complex surgery. It is a tribute to the parents who never once complained about the troubles they underwent through all this, holding her while she cried in pain( sometimes despite all possible mediations for pain), managing all the myriad tubes going in and coming out of her, waiting till she was able to take food till she smiled again.
On 10th March exactly a month after her surgery Ashwini was free of all tubes.
She was finally and for the first time in her life “dry”.
Her mother has learnt (after days of patient training by dedicated nurses) to put a tube into a small opening at the umbilicus to drain her bladder once in three hours (no more than any other child has to go to the rest room) and empty the new enlarged bladder.
Ashwini is now happy, she does still resist the placement of the tube, but in time she will get used to this like so many other children we have seen. She now is seen in the ward, like all her peers playing with her father’s mobile and watching the latest YouTube videos!!
In a year which saw the World Kidney Day dedicated to chronic kidney diseases in women, children like Ashwini need all our help to live out a long life. In Hindu mythology Ashwini the star is ruled by the Ashvins, the heavenly twins who served as physicians to the gods. They have certainly taken good care of this child.
——– Dr. T Krishna Prasad
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