Mumbai: At the first glance, 14-month-old Ria can be passed off as just another infant. But that mischievous smile hides a story of dogged perseverance and faith. Born in Dubai, Ria has already undergone 16 medical procedures, and had been put on a ventilator since birth. For the pint-sized wonder, life itself is a miracle.
Ria's family had anticipated the complications when her mother Delna Dhamodiwalla experienced bleeding in the eight month of her pregnancy. "In the eight month of my pregnancy, I learnt about my twin pregnancy. By then the second embryo had been discarded naturally by my system. My hopes were pinned on Ria," recalls Delna, sitting at her home in Jogeshwari.
Minutes after Ria's delivery, obstetricians at the Dubai Hospital detected abnormal breathing, and decided to keep her under observation in the hospital's Pediatric Intensive Care Unit (PICU). When the irregularities showed no sign of abatement, medical investigations were conducted, which diagnosed that Ria was suffering from a congenital defect, termed TEF (Tracheo-Esophageal Fistula).
In this rare condition, the food pipe remains attached to the lungs and the windpipe at several points. This is known to affect one in every 8,000 babies. Doctors at the private hospital asked Ria's family to shift her to the Al Wasal Hospital, where critical surgeries were performed.
"My husband withheld all the details about the severity of her condition, as I was still recovering from my delivery. He thought that one surgery was all it would take. But destiny had made different plans for us," said Delna.
Even though the first surgery was successful, Ria's breathing was irregular soon, and she had to be put on ventilator support. It was then that experts diagnosed that Ria was suffering from another congenital anomaly, Laryngo-Tracheo- Oesophageal Cleft Type 2 (LTEC-2). This condition afflicts one in every 20,000 infants.
LTEC-2 being a rare genetic disorder, doctors in Dubai advised the couple to relocate to another country where medical facilities were more easily accessible, asking them to choose from countries like India, Switzerland and USA.
After great deliberation and background research, Ria's family zeroed in on Mumbai's Lilavati Hospital. On April 17, Ria was flown down to Mumbai from Dubai, on ventilator support.
"I didn't want to take any chances. I scouted around for a pediatric medical ambulance, and was surprised that Mumbai didn't have many. I finally managed to find one with most of the necessary medical equipment, and after great ado, managed to have it brought to the door of the aircraft. The ambulance conveyed Ria to Lilavati Hospital. Ria's condition had worsened by the time the ambulance reached Bandra, since the ambulance lacked several key equipment," said Delna.
However, when the family met their appointed doctor, Dr Santosh Karmarkar all their fears were put at ease. "CLEFT repair is a very challenging surgery for any doctor. After performing the surgery, we kept our fingers crossed. Thankfully, she recovered fast. It was then that I knew that the girl is a fighter," said Dr Karmarkar.
The family's woes, however, did not end there. Doctors soon broke the news that Ria was suffering from two heart congenital anomalies. She was diagnosed with an Atrial Septal Defect (ASD), an 11-mm hole in the heart, in addition to Patent Ductus Arteriosus (PDA), a condition in which the blood vessel 'ductus arteriosus' fails to close normally, leading to erratic blood flow.
Doctors at the intensive care unit were also worried about the fungal infections, which were repeatedly affecting Ria's liver, spleen, kidneys and lungs. Ria's ICU intensivist Dr Uma Ali, said, "She was not responding to the usual drugs. We decided to administer a newly introduced drug in the market, to which she responded well. We had been trying to gradually reduce her dependence on the ventilator, and started succeeding. The first time she was taken off the ventilator for three hours, everyone was beaming with joy."
"In her fourteen-month long stay at Lilavati, Ria has befriended all the 16 doctors who are involved in her treatment. On her first birthday, (21 February, 2011) the nurses pooled in their resources for a gift of gold earrings for the little one. Another gifted her a dress, and Dr Karmarkar came to check up on her armed with a cake. Such was the popularity of the pint-sized patient, that she cut eight cakes in the hospital's PICU," said Delna.
She added, "The trustee of the hospital himself came down to wish my daughter, and has been keeping a check on her treatment."
When Ria failed to develop normal breathing and could not be weaned off the ventilator, doctors opted for corrective surgery for PDA. Cardiac surgeon Dr Suresh Joshi performed a PDA closure surgery on May 25.
"After the PDA closure surgery was performed, Ria's condition improved significantly, and she even gained some weight. She could even be taken off the ventilator for longer durations."
Hole in heart
"Seeing that Ria was coping well with the surgeries, we decided to close the hole in her heart," said Dr Ali. "The vessels were so tiny that the doctors had a hard time detecting them, leave alone operating on them. After many failed attempts, they finally succeeded," said Delna.
Before the family could celebrate the successful heart surgery, complications from her CLEFT surgery cropped up, and had to be redone," explained Dr Karmarkar. He added, "Every time we diagnosed a new hurdle, I had to summon up immense courage to go and break the dreadful news to the parents."
There was more hardship in store for Ria and her indefatigable parents. "We were performing tests before discharging her, and diagnosed another attachment between the food and the windpipe at the lower end of the neck. We performed yet another surgery, praying that this would be the last one," sighed Dr Karmarkar.
Following the corrective surgery, doctors gradually started weaning Ria off the ventilator; in time, she only needed ventilator support at night. After possibly setting a record of sorts for an infant's longest hospital stay, the brave heart was finally discharged on May 17.
"One year and two months old, she entered her own home for the first time. She is put on ventilator for only three hours each day. Soon she will be able to breath independently. I always knew she would make it. My faith has paid off," said an emotional Delna, who plans to start a foundation to help similar patients. "I will name it Rian, after Ria and my son Zeedan. Though the two have met only thrice till now, they share a special bond."
Jamshed has returned to Dubai to look into Zian's schooling. An employee of a multinational bank, he has spent over Rs 60 lakh in Mumbai alone for Ria's treatment. But her parents are convinced that it was not the astronomical sum of money, but their hope, courage and fortitude that healed their miracle child.
Wonder Baby
MiD DAY chronicles little Ria's chequered life:
FEBRUARY 21, 2010: Ria was born in Dubai.
FEBRUARY 23: Operated for Tracheo-Esophageal Fistula (TEF), a condition which causes the food pipe to attach itself to the lungs and the windpipe at several points.
FEBRUARY 26: A medical procedure Dye study detects a leak from the lungs. Investigations diagnose Ria with LARYNGO-TRACHEO-OESOPHAGEAL CLEFT TYPE 2 (LTEC-2), wherein the food pipe and the windpipe remain conjoined, with a slit.
APRIL 17: RIA flown down from Dubai on a ventilator-incubator.
APRIL 22: Esophago Bronchoscopy performed.
April 23: A second Dye study is done.
APRIL 24: Tracheostomy performed, in order to insert a pipe into the windpipe. A Gastrostomy is also performed to insert a feeding tube in the abdomen.
APRIL 26: Doctors diagnose acute fungal infections have affected her blood, liver, spleen, kidneys and lungs.
May 2010: Esophago Bronchoscopy performed.
MAY 25: Surgery performed for closure of Patent Ductus Arteriosus (PDA).
JUNE 2: Another Esophago Bronchoscopy was done.
JUNE 7: CLEFT repairing surgery performed to separate food pipe and windpipe.
JUNE 14: Another heart surgery performed, to close 11 mm hole in her heart.
OCTOBER 10: CLEFT fistula rectified in her neck.
MARCH 2011: Another Dye study discovers a second leak from the first CLEFT surgery.
MARCH 2011: A pin sized hole connecting the wind pipe and food pipe was diagnosed.
March 28: Another DYE study, leading to an Esophago Bronchoscopy.
MARCH 29: Residual TEF closure, a 9-hour long surgery in course of which the doctors closed all the likely connections between Ria's windpipe and food pipe.
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