“I was always nervous about breastfeeding my baby. My mother told me that it takes a little time. I was worried that my child would starve if I did not get it right. I remember trying to feed him for the first time, he started crying and choking, spluttering milk all over himself. He ran out of breath so many times and almost fell unconscious on my lap. Right from the day he was born, he has loose motion. I got terrified and knew instantly that this was not normal.”
Her baby was starving to death from not being able to drink milkVijayalakshmi rushed her son to a local doctor who told them he may have a stomach issue. He urged them to go to a multispecialty hospital for treatment. Anjaneyya immediately dropped everything and accompanied Vijayalakshmi and his baby to Vijayawada.
He discovered that his baby has Renal Tubular Acidosis, (a disease due to which the kidneys fail to excrete acids into the urine, increasing acidity in the blood). It damages other organs including the kidney itself. In addition, the baby also has cow milk protein allergy and an abnormal amount of calcium in his kidneys.
“I could not even understand when the doctor said he has a problem where he is allergic to milk. Everyone drinks milk and yet it can somehow kill my son. This was not the worst news. His kidneys are getting damaged every day because of a combination of rare diseases. Though we started treatment immediately, there has been no relief. I have been hearing my son cry day and night for 5 months now.”
Medical staff address him as Baby of Vijayalakshmi as he still does not have a nameVijayalakshmi has not even deliberated on naming her son. The family always thought planning before delivery could be a bad omen. When they were ready to dwell over a name, this baby boy had to be hospitalized. Vijayalakshmi is now afraid to dream of a future with her son until he completely recovers.
“For 4 months, he was admitted in Vijayawada. There was no improvement. Sometimes we thought we almost lost him. The doctors there referred us to Rainbow Children’s Hospital in Hyderabad. Here, Dr. Bachina gave us hope.”
Their home and hospital has echoed with this baby boy’s cries every day for 5 monthsVijayalakshmi’s son has cried his lungs out every waking moment since he was born. Sometimes these parents have started crying feeling helpless. His condition worsens after running out of breath. He does not feed, is underweight, and could succumb to his kidney condition without immediate treatment.
“In the past 12 days, we had to admit him to the ICU twice. We still need to do more tests before he can get aggressive treatment. I have no money left for any of this.
They sold everything they had for his treatmentAnjaneyya works as a daily wage laborer and makes about Rs 6000 a month. Vijayalakshmi used to work even during her pregnancy but had to quit once she had the baby. Unable to afford food, and give time, they sent their 3-year-old daughter away to live with her grandparents.
How you can helpThe hospital is doing its best for Vijayalakshmi’s baby boy. Fearing bills, the family contemplates pausing treatment. It may cause fatal effects for the baby boy. Thankfully, the hospital has started this fundraiser for the family to get the help they need to save their son. Vijayalakshmi’s son has a good chance of survival with the right treatment and can grow up to be a normal, healthy child. Now, the family needs funds in the ICU for a few more days during which he can have more tests and targeted treatment for this rare disease.
“We sold our small house and borrowed money from their friends and relatives to pay Rs 6 lakhs of bills in the past 5 months. Now, with no work, and no money left even to buy groceries or a plate of roti, I am feeling scared that I will not be able to save my son.”