“For 45 days my babies were incarcerated in NICU cradles, with IV lines and machines hooked onto their bony legs and hands, battling for dear life”

How I looked forward to the special joy of twins born 6 years after my marriage. But when my-four-week old babies were diag¬nosed with Retinopathy of Prematurity, with an 80% chance that they would never see well, I was shattered, totally helpless. Caught in a nightmare with no escape route! I stormed, “Why me?” railed: “I have saved so many heart patients!” then finally went down on my knees: “Please God, let my children be among the lucky minority!”

EARLY STRUGGLE
I have always been a fighter who thrives on challenges. Born 37 years ago to middle class working parents Tanman and Girish Gandhi in Goregaon, a far flung suburb of Mumbai, we lived in one room in a dilapidated chawl with a common toilet for the entire floor. It was a struggle to make two ends meet, but my father motivated me to become a doctor. And I did make it with 98% to the prestigious KEM hospital, despite an unimpressive school and college, no tuitions (although I gave tuitions to make money).

In 1994 after passing my MBBS at 24 I married a doctor and we both took our MDs — he in Critical Care and I in Preventive Medicine, which I refined to Preventive Cardiology — making me the first Indian woman in the field.

And then at 26 it was baby-making time. Now I’ve always had irregular periods, but with my frenetic study ‘n’ work schedule I’d largely ignored them. To my surprise my sonography (my very first) showed Polycystic Ovarian Disease (PCOD), a condition which involves enlarged ovaries with many fluid-filled cysts and high levels of the male hormones. Since the condition usually teams with acne, facial hair, obesity — none of which had touched me — it had never ever crossed my mind. I was given a 30% chance of conception and was treated with clomphane, a drug that stimulates ovulation. Three cycles with stepped up dosage were fruitless.

After this the gynaecologist tried Intrauterine Insemination (IUI) in which my husband’s sperm was washed and injected straight into the cervix. Five cycles later my womb remained unyielding. Next I opted in for In Vitro Fertilisation (IVF) with Intracyto¬plasmic Sperm Injection (ICSI). This means that a single good sperm is injected into a single egg, removed from me, fertilized in a petridish and then inserted into my womb.

I was prescribed hormonal therapy with human gonadotropins, injections to stimulate the follicles of the ovaries to mature, after which another set of injections of human chorionic gonado¬tropins triggered ovulation. I injected myself while I was walk¬ing, sitting on a chair.

About 10% to 20% women treated with Human gonadotropins develop ovarian hyperstimulation syndrome. I was unlucky and developed acute kidney failure and ascites (accumulation of fluid in the abdominal cavity) — both dangerous and painful conditions. It was only then that my parents and in-laws discovered that I had been desperately trying to conceive for the last three years. Until then the universal consensus had been: “Pratiksha is too involved in her career to start a family!”

I decided to take a break from it all for six months. And went on a 10-day Vipasana camp where I meditated, did yoga, detached myself from my recalcitrant body. I studied more about non-inva¬sive cardiology. I tried not to think about Assisted Reproduc¬tive Technology (ART).

SUCCESS AT LAST
Amazingly, my next IUI cycle combined with clomphene found me with triplets. On my gynae’s advice I reduced one fetus, so as to give the others a better chance for survival. A cervical stitch framed after the famous Dr.Shirodkar, helped to keep my twins in where they belonged. Total bed rest until D-Date was also pre¬scribed, so I consulted at home, in between huge bouts of morn¬ing, noon, night sickness.

Seven months into my pregnancy found a burst stitch. Labour started. On 25th November 2000, I rushed to a small nursing home where Mahek and Muskaan were born by caesarean section, as they were too weak to make their way out naturally. They weighed 1.2 kilos and 1.4 kilos respectively. We were relieved that they had cried when they emerged, but they were so tiny that their faces were a blur of black hair. They were ferried to a nearby NICU (Neonatal Intensive Care Unit). Everybody around me was wailing and I had to console them: “All will be well.” Summoning every shred of stamina I got discharged after just 2 days, walked down the steps and then two flights up to the NICU. I pooh-poohed the pain of my abdominal wound. I had to see my babies. As I tell them now this was my first manifestation of Motherly Love.

For 45 days my babies were incarcerated in NICU cradles, with IV lines and machines hooked onto their bony legs and hands, bat¬tling for dear life. Mahek even threw up blood. Since they had no suckling reflex I had to express milk which initially had to be fed to them by teaspoon. I stroked, spoke and sang to them end¬lessly; after all they had heard my voice before birth and were accustomed to it. Like me, my twins are also fighters, from the time that they were born.

EYEBALLING THE PROBLEM
Infants who are born prematurely are always carefully examined for Retinopathy of Prematurity when they are 4 weeks old. It is a disease in which the small blood vessels in the back of the eye (the retina) first stop growing and then grow back in a disorga¬nised fashion. These miniscule blood vessels may bleed and lead to scarring. In the most severe cases, the process may eventually result in the detachment of the retina and subsequent loss of vision.

The ophthalmologist suggested “Why don’t you take them to the US?” That didn’t seem a very sensible thing to do to one-month-old, low weight, premature babies. Our spinning minds and anguish gave way to rational thought. As doctors we are meant to be medically resourceful. We scoured records for a pediatric ophtha¬lomologist and found our saviour, Dr. Karobi Lahiri at Bombay Hospital. “I will save their sight!” She vowed. And she did.

Dr. Karobi gave laser treatment to the outermost portions of the retina, to stop the abnormal growth of the blood vessels and so decrease chances of detachment. Muskaan’s retina threatened to detach and we had to create a special cradle where she could sit at an angle. The treatment worked and we have to visit Dr.Karobi at regular intervals. Dr.Karobi then painstakingly tested the reflection of light on the retina and fitted the five-month-old babies with thick glasses.

We then made a disconcerting discovery — bulging umbilical hernias on both tiny tummies. We did nothing, did not work to subject them to any more procedures — I am anti-surgery, after all. Mercifully, these disappeared spontaneously.

For the next six months our home was transformed into an NICU with all manner of monitors and machines. But at the end of this, their milestones were met with clockwork regularity.

After the girls celebrated their first birthdays, it was time for me to plan my next “baby”. This was not a small person, but an Institute of Preventive Cardiology (IPC) at Lower Parel. I use holistic non-invasive medicine to prevent, treat and cure heart disease of all types without surgery. I use Chelation, Enhanced Counter Pulsation (ECCP), Arterial Clearance Therapy (ACT), yoga, Naturopathy, Magnetotherapy, Acupressure, diet. Today I also have centers in Thane, Borivali, Andheri. My mission is to thwart the WHO prediction: That every fourth Indian will succumb to heart disease
by 2010.

COPING, THRIVING
Through it all the girls required attention. They had surgeries to change the pull of the eye muscles and correct squints in one eye each. We managed to bypass the second squints, which righted themselves with exercise. We had to work with a doctor for eye exercises, to read and to write. There was twice a week occupa¬tional therapy at Lighthouse for fine motor and gross motor skills.

The girls have to wear thick glasses. Other children can be need¬lessly cruel, specially about those who are different. I call mine “Brave Hearts” and have taught them to accept teasing and taunting about their “Four Eyes” by remembering the old rhyme: “Sticks and stones can break my bones. But words can never hurt me!” They have learned to ignore insensitive children who are just thoughtless. I will not allow them to develop wounds in their psyche about their appearance.

My girls look after their unbreakable spectacles perfectly. They choose their own frames — turquoise blue, shocking pick, russet red — every six months. Their number is now minus 8 and with exercises they are making amazing progress.

In 2004 I was divorced and moved to Phoenix Towers which is five minutes away from my IPC clinic. The girls took the split in their stride. I enrolled them in Hill Springs, a school which suited my holis¬tic psyche. There are 10 students to one teacher. They do not push the children and there is all-round emphasis on karate, swimming, yoga, dancing, music. Tuitions are firmly discouraged. The principal Nalini Pinto knows each child personally.

They are in Std II in separate divisions to encourage individual¬ity. Yet a new problem has emerged — a learning disability in handwriting, which I will address on a war footing. I work with the girls to expand their horizons. They call this Mama’s School, and today we did a fun experiment with sweet, salt, sour, bitter.

Two years ago something amazing happened. While working on one of my projects I met Reeg Deb a young music composer. We collabo¬rated blissfully, bridging an 8-year age-gap effortlessly. One thing led to another, and we were married in December 2006 with the girls cheering all the way. Reeg is a Bengali to my Gujar¬athi, comes from a totally different background, with different tastes and purities. But he is honest and kind, great fun to be with, and best of all adores the girls. The feeling is mutual.  Reegy is my best support system. Our family is now complete. My cup of joy is complete, with new meaning and vitality.
 
One wing of the house is for the children. A basketball hoop, dart board, exercycle, trampoline, coexist in happy harmony with computer study desks, art corner, fish tank, synthesiser — a far cry from the one-room tenement of my youth. My proud parents visit every weekend.

My chatterboxes speak to one another in a private language of giggles, grunts and nonsense words. But are otherwise merrily communicative and have a rare capacity for affection. They are relatively unscarred, despite their severely traumatised lives. Yet I never allow them to get away with tantrums. I never say “They’ve endured so much, they are entitled to be disagreeable.”
Still they are basically their own persons — wear different clothes and have their own special toys. Mahek is hyper active, with an excellent memory, is amazingly mature, and wants to keep everyone happy: Peace at any cost. She never cries, not even when she had to have stitches on her leg. Her ambition? To run my IPC and be a famous singer, to boot. Muskaan boasts: “Mahek came out first, but I am 2 inches taller and weigh 5 kilos more!” She is marvellously independent, non-aggressive, non-competitive, very giving, without a jealous bone in her body. She has a passion for arts and the synthesiser and wants to be an Animal Explorer like crocodile hunter Steve Irwin.

I am confident that my girls will inherit my special strengths that will sustain them through whatever lies ahead. It is a strength that comes from within, bolstered by the rich love and support of those who are close to us — my husband, my parents.

As told to ANNE DE BRAGANCA CUNHA

Courtesy: Health Magazine