Spot that hole, doctor

Shweta Kumar, 29, was full of trepidation the day she was to deliver. A fetal echo test at nine months showed that one heart valve in her baby was leaking, dilating the heart and suppressing the lungs. After delivery, the baby was immediately put on ventilator where she remained for the next four months. “She was put on intravenous fluids and had life-saving surgery at 16 days,” says Shweta, who travelled from Satna, Madhya Pradesh, to Delhi for the delivery.“Though the baby is 15 months now, I’m always tense when she’s over-active.”
And that’s the thing about congenital heart defect (CHD). It’s heart-breaking as it affects the tiniest of humans, leaving them blue, breathless and bound by IV tubes. CHD affects one out of 100 live births and 1.7 lakh patients are added in India every year. It’s responsible for 10% of neo-natal mortalities. In some cases, it’s diagnosed in the womb; in others, only after birth and sometimes in adulthood. It’s mainly caused by faulty genes, certain medications and alcohol. The risk is three times higher if the first child has CHD.
While shortness of breath, palpitations and limited ability to exercise are symptoms of CHD in adults, in kids it can manifest itself as a bluish skin tinge, poor weight gain and recurrent lung infections. Correcting these problems requires special skills quite different from dealing with adult patients.
“Neonatal heart surgery is very complex,” says Dr V K Paul, head of pediatrics at AIIMS. “One is dealing with fragile babies having distorted anatomies. Their blood vessels are very small and a high degree of expertise is needed to set things right. Sadly, this is lacking. The entire northern region, excluding Delhi, has perhaps just two hospitals with neonatal expertise.”
Worse, radiologists may not be vigilant enough while recording the fetal echo, a detailed scan of the baby’s heart. Pediatricians say heart abnormalities often go unnoticed during an ultrasound. “At 18 weeks, they should be able to make this out,” says Dr Smita Mishra, pediatric cardiologist at Fortis Escorts, Delhi. “But very few do.”
In one case, a radiologist did 12 scans in three months and still didn’t find any abnormality when there was one, says Dr Vikas Kohli, pediatric cardiologist at Delhi’s Apollo Hospital. “If these abnormalities are found before 20 weeks, parents can abort the fetus. Hearteningly, most prefer to go ahead with the baby’s surgery after delivery rather than abort the fetus,” he says.
However, parents such as Shweta Kumar may have reason to be angry. “I lost precious time as my doctor didn’t tell me about the importance of fetal echoes and by the ninth month (when it was finally done), I couldn’t do anything,” she says.
Defects can occur in the heart’s chambers, valves or blood vessels. While some can be corrected with medication, others such as hypoplastic left heart syndrome, a rare problem in which the left ventricle is severely underdeveloped, are hard to treat, says Dr Paul. Babies with ventricular septal defect and patent ductus arteriosus (see box) should be treated within three-four months, says Dr Kohli, or they become inoperable. Dr Mishra says some abnormalities in unborn babies, such as a heartbeat of over 200 (normal is 140-160), can be treated with medicines. But direct intervention into the womb is not an option yet.
Common CHDs in babies
Ventricular septal defect: Wall (septum) separating ventricles doesn’t form fully, creating a ‘hole’. Oxygenated & impure blood mix. Can lead to heart failure, infection, irregular heartbeats
Atrial septal defect: Wall separating atria doesn’t close properly. Flow of extra blood spikes lung BP. Result: pulmonary hypertension
Patent ductus arteriosus:
Blood vessel defect. Causes laboured breathing, poor weight gain in first year. Can lead to congestive heart failure later
Bicuspid aortic valve: Valve defect. Heart works harder to push blood through diseased valve. Can lead to enlarged heart, abnormal heart rhythms, heart failure
Birth pangs
1 in 100 babies born with CHD
1.7 lakh new cases a year in India; 60% need medical intervention Warning signals: Bluish skin tinge, poor weight gain, recurring lung infections