Pregnancy need not always be a stressful experience. As the 11th South Asian Regional Conference of Clinical UltraSonography in Practice (CUSP) held in Chennai this week demonstrated the technology has sufficiently advanced to come to the rescue in most cases. But the law needs to be a little more flexible to enable the individual to take more informed choices.
Beyond states of anxiety: Current technology can help detect and treat abnormalities.
Asha and Vinod* are expecting their first baby and are naturally overjoyed. But that doesn’t stop them from worrying. Whether it’s talking to doctor-friends, asking relatives or trawling the Net, the couple are on a serious quest for preg nancy-related knowledge: what is normal, what can go wrong, why, diet, exercise … “We ask Asha’s doctor too,” says Vinod flourishing a daunting list. “But the clinic is so crowded and the doctor’s so busy …” he trails off. Both their mothers are rather bemused and also slightly scornful. “In our day, we just had babies,” they sniff. “No scans, no medicines, no fuss.”
The situation is different for Latha and Krishna*. Lata had a miscarriage the first time, the second time the baby was still born; their anxiety this time is understandable. What does their doctor say? They look nervous. “We didn’t ask; our families say these things happen. Also we were not in a big city last time,” says Krishna. “So far, everything’s been normal, we’re hoping for the best,” adds Latha.
These two couples put in perspective what Dr. Suresh of Chennai’s Mediscan Systems means when he talks of pregnancy now being “state of anxiety”. The media spotlight on the Nikita Mehta’s appeal for termination of her 26-week pregnancy has focused attention on congenital defects, causing many to worry more than they normally would. Preventable
“But,” says Dr. Suresh, “about 70-80 per cent of birth defects can be prevented or caught early.” A view seconded by geneticist and dysmorphologist Dr. Sujatha Jagadeesh and gynaecologist Dr. Uma Ram.
Just as obstetrics and gynaecology focuses on maternal health, foetal medicine focuses on the foetus. However, in India, “foetal medicine as a sub-speciality is not offered,” says Dr. Uma. “High risk obstetrics covers a bit of it and some centres offer a fellowship. But it’s not like in the West where foetal medicine involves two additional years of study.” It is here that the much-maligned ultrasound plays a crucial role. Indicted for its role in sex-determination, the ultrasound “has increased our knowledge of the baby like nothing else,” says Dr. Uma. “And helped deliver babies we would have otherwise lost.”
She offers a case study to validate this point. In one case, the ultrasound picked up diaphragmatic hernia in the foetus but the couple chose to undergo a detailed study, which gave them the reassurance they wanted. The baby was operated on immediately after birth. “He’s doing fine now,” she says happily. “That’s what foetal medicine is all about.” Speaking of ultrasound, Malathi*, who’s just had a baby, has averaged almost one scan for each month of her pregnancy. Asked if so many were necessary, she shrugs, “My doctor did them, so I suppose so.” But the doctors are quite startled. Crucial scan
Dr. Uma says three are essential; while Dr. Sujatha pegs it at four. They agree that the Nechal Translucency Scan at around 11 weeks is crucial. Apart from checking growth and limb formation, it also measures the thickness of skin at the nape of the baby’s neck. Increased thickness could indicate defects like Down’s syndrome or congenital heart defects. The really important thing here is training. Even a few millimetres this way or that can make a huge difference. This scan picks up about 90 per cent of Down’s syndrome but often the scan and/or the problem are missed. The next is the 20-week scan to pick out any major abnormality. The last at around 32 weeks helps fix the delivery date by assessing growth and fluid around the baby. “That’s more like a social scan,” smiles Dr. Uma. “Couples want to see the fully formed baby.”
In an ideal set up, most defects should be picked up by 20 weeks. But Dr. Uma sounds a note of caution. “Picking up anomalies depends on two things: quality of machines and expertise of the operator. You need high end machines with a good resolution to get a clear picture.” So what happens if a problem is picked up after 20 weeks? Sometimes an earlier scan may only give a vague indication. “You can’t make a decision to terminate at 20 weeks in such cases,” says Dr. Uma firmly. “You have to wait to see if the problem is incompatible with life or if it has potential to be treated.”Vague laws
The Medical Termination of Pregnancy Act does not state what is to be done in such a situation. An unwanted pregnancy can be terminated under 12 weeks with a certificate from one registered MTP provider. Between 12 and 20 weeks, termination has to be certified by two providers. Beyond 20 weeks, termination is illegal unless there is a fatal risk to the mother’s life. That’s not always how it works on the ground, say the doctors. At times foetal abnormality may not be life threatening. “Often a limb may be missing or there may be a deformity like cleft lip,” Dr. Uma says. “Here, the rejection is more due to social attitude.” Another angle is gender. “If it’s a boy, they’ll reconsider. If it’s a girl, it’s termination straight away. When I refuse to tell them, they go away; there are others who are not so particular,” she says regretfully. Dr. Sujatha agrees with this assessment. “Cleft lip can be cured surgically and there are places where it is done free for economically weaker sections; so that really isn’t a criterion for termination. But there are cases when you know the baby is not going to survive, when the kidneys are not formed or when there is a major malfunctioning of the heart… what do you do then?” Dr. Uma also asks, “What happens when couples insist on going ahead with termination despite all the counselling and reassurance that we give? If I refuse they’ll go somewhere else and may be get it done in an unsafe way. Sadly there are doctors who may not have too many scruples.”
Dr. Suresh adds a more chilling note. “I’ve known cases where the family will just starve the baby if they have to carry it to term. ‘Anyway it’s going to die,’ they tell us. And there’s nothing we can do about it.”
All of them make it a point to stress that this is not confined to the economically weaker sections. “It’s equally, if not more, present in so-called well educated, wealthy, upper class families,” they say in unison.
Once the anomaly is picked up, the parents are counselled. Counselling often includes the extended family, though “ideally the decision should be left to the couple,” says Dr. Sujatha. “In India, that’s not always the case,” she adds wryly.
Once the first shock is over, the main issue in decision making is finances. “It’s a question of multiple affordability and expertise availability,” says Dr. Uma. “Apart from the baby’s bills, which may include surgery/ICU/medicines, there is also the aspect of the parents’ expenses if they’re from another town. What about getting leave from work?” A point Dr. Sujatha also raises.
“After all this,” says Dr. Sujatha, “we may not be able to guarantee the chances of survival.” At this point most parents want to know why they should carry the baby to term. The only answer is: because it’s illegal to terminate the pregnancy. One that does not satisfy either the parents or the doctors.
The doctors are clear that they would like to see the MTP Act amended to include clearer provisions on their options when lethal abnormalities that cannot be treated and abnormalities that can be corrected are picked up after the 20-week deadline. “The procedure for termination after 24 weeks is similar to being in labour. It’s traumatic enough; you don’t need legal complications,” says Dr. Uma. “This is not about being pro- or anti-life. All we’re asking for is a clearer law. Sometimes mistakes happen. Not all ultrasound centres have the same quality of machines and/or expertise. So a significant number of anomalies are overlooked,” says Dr. Sujatha, who suggests setting up an Ethical Committee to examine such cases on an individual basis. “We need some kind of legal establishment to guide both doctors and patients,” she says thoughtfully. “It’s a difficult situation for both.”Need for support systems
Dr. Suresh has another angle. “What we need, apart from amending the Act,” he says, “is, first, a Foetal Master Health Check Up and second, a one-stop shop that can tell parents what to do. There has to be some kind of support system: both financial and otherwise. Leave alone the poor, even the middle class may not be able to cope with the expense involved. In case of metabolic disorders like Mucopolysaccharidosis (MPS), we’re talking about medicines worth a few lakhs a month. And the stress of coping is immense especially as, in India, it is mostly the mother who faces the brunt of it. Some cope; some just cannot.”
Ashwin and Hema* know what he’s talking about. During Hema’s first pregnancy, they were told that the baby’s brain was not properly developed. They chose to go ahead; Hema quit her job and devoted herself to the baby’s needs. “He’s five now and we wonder what will happen to him after us but we have not regretted it.”
Rajathi*, on the other hand, chose to terminate her pregnancy when she realised that her child would need special care. “My husband is jobless; where will I find the money for treatment and how will I care for it?” she asks defiantly. “I had no choice.”
Two ends of the spectrum in more ways than one. Who’s to say which is the right way: Doctors or lawmakers or the individuals involved?
*Names have been changed
Dos for expectant mothers
Start taking folic acid well before you decide to have a baby. It needs to be in the system for at least a month before conception to be effective. Dr. Uma and Dr. Sujatha suggest adding vitamin B 12 also since studies have shown that B12 deficiency is quite common in India. This will help prevent neural tube defects, which constitutes 70 per cent of the problems in the new born.
Check immune stats for rubella. This involves a simple blood test. If you are not immune, get vaccinated at least three months before you plan conception. This helps prevent an attack during pregnancy, which may cause mental retardation and other problems.
Eat healthy meals. Avoid junk food, since high fat and too much sugar can cause birth defects. “Young women are now showing signs of uncontrolled diabetes and that’s going to affect their pregnancy in a big way,” says Dr. Sujatha.
Being pregnant does not translate to no exercise. Check with your doctor at each stage and do whatever is appropriate.
If you have a previous history of multiple miscarriages or still births, discuss it with your doctor. It may be a sign of metabolic or genetic disorders. An investigation can usually tell you what the problem is and how to approach pregnancy.Technology updates
The Clinical UltraSonography in Practice, or CUSP as it is popularly known, was began in 1989, to help doctors keep track of advances in the field of ultrasonography and its applications. The eleventh South Asian regional conference, a four-day workshop and conference now on in Chennai from September 25. This conference, held once every two years since 1989, presented state-of-the-art academic interactions with emphasis on new technologies. Various practice guidelines regarding technique and performance of ultra sound were discussed. These were of relevance to sonologists, radiologists, obstetrician and gynecologists, physicians, surgeons and post graduate students of these disciplines.
This year’s distinguished faculty from overseas include Dr. Lil Valentin from Sweden, Prof. Ananda Kumar from Singapore, Dr. Anil Ahuja from Hong Kong, Dr. T.P. Bhasakaran and Dr. Japaraj Robert Peter from Malaysia, and Dr. Amarnath Bhide from the U.K. An equally distinguished member of the national faculty participated in the scientific deliberations. Professor C.S. Yajnik was presented the Distinguished Scientific Award by Dr. N.S. Murali. Over 1500 delegates from the country and neighbouring subcontinent participated.
This conference was organised by Mediscan Prenatal Diagnosis and Fetal Therapy Centre, Fetal Care Research Foundation Chennai, and Society of Medical Learning Resources Transfer.Laws and attitudes
With female foeticide being rampant and the country’s sex ratio being more skewed, the role of the ultrasound in determining the sex of the foetus is often in the spotlight. But there are many issues involved.
Number One is, of course, attitude. “Strangely, many doctors actually sympathise with this longing for a son.” Dr. Uma’s disbelief is clear. “So they won’t tell you the baby’s sex openly but there are a whole bunch of codes.” Dr. Suresh gives away a few: if the doctor smiles or gives you a thumbs-up, it’s a boy. Conversely if he/she looks sad, it’s a girl. Another is to look at strategically placed appropriate pictures.
The second is the MTP Act itself. Apart from clearer clauses on what to do with late identification of foetal anomalies, there is scope to tighten it to root out foeticide. Dr. Suresh explains: “See, one cannot tell the sex of the foetus till around 14 weeks. And usually pregnancy is discovered at around three weeks. Don’t you think by 10 weeks the couple should know if they want the child or not?” He suggests that the 12 weeks limit be reduced to 10 and the law made more stringent for termination after 10 weeks. “That should help curb foeticide in a big way.”
Another point is to make the doctors who perform the medical termination of pregnancy more accountable. A third is who does the ultrasound. In India, an ultrasound can be performed by a gynaecologist, sonologist, sonographer and radiologist. Though a doctor has to be present if the person doing the scan does not hold a medical degree, this rule is often flouted. As a result, unauthorised centres spring up especially in interior areas.
The ultrasound scan is a useful feature but as usual technology is being misused and manipulated to serve other ends. Plugging loopholes in the law may go some way but unless attitudes change, nothing will help, say the doctors firmly.
6 months ago