4-month-old survives rare heart disorder

It was nothing short of a miracle that a four-month-old baby from Solapur survived over 20 heart attacks due to a rare anomaly.

| Mumbai | Published: March 3, 2016 5:31 am

It was nothing short of a miracle that a four-month-old baby from Solapur survived over 20 heart attacks due to a rare anomaly. Doctors who treated her know she has been lucky to escape death narrowly, due to early diagnosis of a rare condition and her parents’ spontaneous decision to have her undergo surgery.

Aditi Pramod Gilbile, living in Barshi, Solapur district, was diagnosed with the rare Alcapa, short for Anomalous Left Coronary Artery from Pulmonary Artery, a condition in which the artery reverses the blood supply from the heart because it is abnormally attached with the pulmonary artery. The incidence of the disease, say experts, is one in three lakh. Since the disease develops while the baby is still in the womb, diagnosis is difficult.
About nine of 10 children with this disease die within a year of developing symptoms as the heart functions reduces fast. The symptoms include sweating and incessant crying, “which could be due to several reasons,” says Dr Shiv Prakash, pediatric cardiologist.

Aditi’s symptoms began in the first week of January, while she was three months old. She sweated profusely, did not drink milk and while she had experienced heart attacks and chest pains, she could only convey it by crying. “We went to six hospitals in Solapur, Pune and then Mumbai. In Barshi, the doctor detected low heart beat. We went to Pune where a doctor diagnosed her with Alcapa,” said mother Priti Gilbile.

Doctors suspect Aditi experienced multiple cardiac arrests which weakened her heart function each time they occurred. Aditi’s ejection fraction, which shows how well the heart is pumping blood, was critically low at 15 per cent.

Normal hearts her age have 65 per cent. “At such a low rate, a child can suffer heart attacks every three days,” says Prakash.

The reason she survived was because her parents wasted no time. Within a month, they were able to get her operated by borrowing money from relatives. The cost was Rs 3 lakh.

“I started researching about Alcapa. I saw many videos to understand how surgery is done. We realised that if infection control after surgery is not good, our baby could die,” father Pramod Gilbile, employed with a private firm, said.

The couple first visited KEM hospital in Mumbai after trying their luck in Solapur and Pune. They then approached Sir H N Reliance Hospital, in Grant Road. An urgent surgery was done within two days of admission on February 22, which lasted for nine hours. Prakash, heading the hospital’s paediatric heart center, said that Aditi’s artery, less than 1 mm in width, was meticulously repositioned to the correct location in the heart, that is the aorta, by a team of six doctors. The area from where it was removed was reconstructed with a patch of her tissue from the heart.

“But the child had reached us early which saved her. Two years ago, I saw a similar case of three-month old baby. Unfortunately, the baby came to us very late and died before surgery,” said Dr Shreepad Jain. Aditi was kept on ventilator for five days. She is currently in the intensive care.

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