Premature baby surviving rare disease

Scared and confused, the mother went into premature labour at 27 weeks of pregnancy only to be told that she would have to find a hospital equipped to take in her extremely premature child suffering from extensive Hydrops.

“During prenatal check up, one day, I was given the shocking news that my baby has Hydrops,” explained the mother.

“I was frightened and soon started having premature contractions. They hooked me up to machines to monitor the baby’s heart rate (which took them forever to find), and movement. When the test was done, they told me to go to another hospital as they did not have any facility to take care of such babies who had twin problems such as extreme prematurity and extensive Hydrops,” she said. She was then rushed to the Neonatal Intensive Care Unit at Zulekha Hospital for delivery.

Hydrops is a condition where the body swells up due to the presence of excessive fluid. The condition can especially be fatal for a premature child, according to Dr Monika Kaushal, Consultant Neonatologist at Zulekha Hospital in Dubai. Water collects in the abdomen, lungs and skin causing the body to appear bloated and can damage the body organs.

“The experience shattered my dreams of a normal, healthy delivery and of the desire to take home a baby soon after,” she said.

“An emergency c-section was done and I did not even get to see him. I was told he had very little blood in his body and whatever blood he had was very watery,” added the mother.

“I finally got to see him two days later. It was a traumatic sight. His head was the size of a small walnut while the abdomen was the size of a football.”

“There were tubes everywhere, a ventilator, wires and beeping lights and weird sounds. I was told his chest was also surrounded by fluid and that he did not breathe at birth.” “Days passed, and he still remained bloated and there was no sign of fluid decrease. His kidneys were not working and he had to undergo multiple blood transfusions. His lungs were not fully developed, and he was having problems stabilising his blood pressure.”

“From the way everyone talked, it looked like he was not going to make it. The next 70 days we spent in NICU dealing with his severe respiratory problems, bilateral hydro thoraces, collapsing lungs, jaundice/abnormal liver function, chronic lung disease, and several infections,” she added.

“Eventually, his kidneys started to work and he started losing weight (fluid). Doctors were also able to wean him off the ventilator. By this time he was also getting fed through a tube.”

Every week the ophthalmologist examined his eyes and I was told to expect problems in the retina. But again he surprised everyone when he was found to have no problems at all, she said.

“He spent 12 weeks in the hospital. We brought him home a few weeks before his original due date,” she said.

Dr Monika said the baby was a real fighter. “Survival rates for such children are only up to 40 per cent. We are still watching him since it is difficult to say now whether a child born so prematurely will develop normally,” she added.

asmaalizain@khaleejtimes.com