The whole half

Stuti or Bittu,as her mother calls her,and Aradhana were born in the same hospital,run by the Evangelical Lutheran Church. Their hearts were enclosed in a common sack that supplied blood to the heart while their livers,with separate blood supplies,shared common tissue. In medical terms,they had a thoraco-omphalophagus fusion.

Daunted by the prospect of medical expenses and the rigorous care their daughters would need,parents Maya and Hariram Yadav,a small farmer,donated the children to the hospital a few days after their birth.

It was the staff that named the girls Stuti and Aradhana,and brought them up in the neonatal ICU NICU. Prayers were held at the village church for the girls,gifts were showered upon them,and the two became household names in Padhar.

About a month after their birth,the hospitals medical superintendent and surgeon,Dr Rajiv Choudhrie,started contemplating separating Stuti and Aradhana. It took nearly a year to set up the surgery,which took place on June 20 last year. Aradhana survived for just two weeks after the surgery. But every day of the year since,as Stuti blossoms into a regular two year old,a village,a few doctors and an apprehensive family have been living a miracle. At Padhar,people say beti is finally getting ready for her bidai.

A set of premature,newborn triplets now share space with Stuti in the NICU. But a corner of the room remains her abode. It has a mattress,shelves packed with toysdolls,stuffed animals,cars,buses and motorbikesan almirah with colourful frocks,her collection of clips and bags,and that mirror. Stutis meals are cooked in the hospital pantry in utensils kept aside for her. Her menu is different,and is often tweaked according to the little princesss preference.

Tu Tu,as she is known in Padhar,requires special care as she has a mesh made of collagen,that cost a little over Rs 50,000,covering her heart. Her sternum bone in front of the rib cage and a part of her upper abdomen were removed during the surgery. She sometimes wears a chest guarda shield held around her with velcroto prevent any injuries to the wound site. Given the missing bone,her chest is uneven.

Dr Choudhrie says her body still reacts to the collagen,leading to frequent pus formation and discharge along the incision. We expect some fibrous tissue to grow over the mesh,but it will take another year or so, he says. She needs no other restrictions till then,except we need to see that she does not hurt this site. The pus discharge just needs to be cleaned with sterilised cotton.

In the Padhar hospital,Tu Tu is the centre of attention. Sometimes she addresses the three women who have been taking care of her for the past two years,in eight-hour shifts,by nameNee-haa Neha,Lo-lo Lallo and Sidhu Sindhu. At other times,they are all mummy. Her pediatrician Dr Ruma Alexander is also mummy,as is Dr Deepa Choudhrie,Dr Choudhries wife and the hospital radiologist,and her sister-in-law Dr Lisa.

She is invited to birthdays of village children as well as for church events and functions at the Choudhrie residence. She enjoys playing,especially lapping at the edges of a pool in the farmhouse the Choudhries own,trying to jump in with the other kids. She likes eggs,chicken and mutton, says Dr Deepa.

With her days in the hospital drawing to a close,for the last few days,Stuti has been spending a lot of time at the Choudhrie home,including sleeping over there.

Like other kids her age,Stuti has learnt to point out the different parts of her face when prompted,rattles off the English alphabet and converses with the Choudhries in broken English. In the NICU,she plays with IV bottles and syringes. When it comes to her favourite game of hide and seek,she hides under incubators and mobile X-ray machines.

Can Stuti make the transition from this to a house that recently saw parts of its teracotta roof fall off following the first spell of rain,located 45 km away in Chicholis Churiya village? This is what is weighing heavy on the mind of her doctors,and increasingly her young mother,all of 23.

Over the last year,several attempts to shift Stuti had to be put off. Initially,the doctors wanted to observe her for a few months after the surgery. In the winter months,she started getting frequent spells of fever and cold,and doctors told Maya she would have to wait a little longer. After that,the doctors arranged twice for Maya to come over and stay with her daughter for a few days at the hospital to get acquainted with her.

Her mother-in-laws illness kept Maya away till May 19. By then the staff realised that Stutis birthday was just over a month away,and decided that this would be the best day to let her go.

Both sides have started planning for her departure. Lists have been made and circulated for what Stuti needsanother mattress,a suitcase,but no toys; she has too many. Last week,the hospital staff also got her ears pierced and bought her a set of gold earrings and a necklace.

Maya watches these preparations intently,realising there are so many things she barely knows about her daughter. Seeing Stutis attendant Neha readying her for a bath,she says: I have to observe how she holds her,picks her up. Now that she is finally coming home,I need to learn every little thing. I am always scared of hurting her.

Small incidents haunt her,like when she last came visiting and Stuti tripped over the wheel of an incubator. I was running after her and she fell. What must these people here have thought? Maya winces.

Dr Rajiv says they have tried their best to soothe Mayas fears. That she is willing to look after her now is a positive sign.

It worries the Choudhries that nobody from the family apart from Maya comes to visit Stuti and that Maya once suggested that she would take Stuti but return her if things didnt work out. I told her this is not some game,

Dr Deepa says.

Maya knows how it looksfrom the other side. There were many reasons why I left my daughters here after their birth, says the 23-year-old. My family had spent Rs 60,000 on their NICU stay and we could not afford more. I come from a family of priests,my father-in-law is the priest of the Yadav colony in our village. I was worried that since my daughters were joined together,they would turn them into demi gods.

While the chaplain in-charge has spoken to Maya and husband Hariram several times,the concept of counselling,for what they faced,is foreign. The couple were evaluated by a psychiatrist only for a few days immediately after the surgery. Now Maya dismisses the idea completely.

There are other things on her mind,she says. Squatting near Stutis red bathtub,scrubbing her arms while keeping an eye out for Nehas approvalwho has reluctantly allowed her to bathe the childMaya adds,I have written four applications to our sarpanch to have a toilet built in our home. They dug the holes,but we are still waiting for the water supply. I hope the work is complete before Stuti comes home.

Another worry is that her home has no electricity,and Stuti is used to being in an air-conditioned NICU. Their village doesnt have a pucca road either. What if Stuti falls? They say she is Betuls daughter,so shouldnt she have a concrete road to play on at least? Maya asks. Stuti has also got used to good non-vegetarian food,and Maya worries how she will adjust to their food. I dont mind her eating non-veg but if my father-in-law or the village elders hear of this,they will be furious.

Her biggest concern,however,is regarding son Praveen,older by just over a year. He never got to know Aradhana,and she is not sure how he will adjust to Stuti. During the hospital visit,she urges the two to address each other as Bittu and Bhaiyya,and to hold hands. But she has to be careful. As Praveen chases Stuti,playfully pushes her or tries to take her toys,Maya rebukes him. Praveen is not allowed on her bed and Neha stops him from taking out Stutis motorbike to play,much to the mothers embarrassment. Praveen in turn refuses to share his chocolate with Stuti.

Stutis paediatrician Dr Fernandes says the blossoming sibling rivalry is healthy. Physically,Stuti is now absolutely fit. We just need to be careful that her brother does not hurt her on her chest wound, the doctor says.

They could do a surgery later to correct the minor deformity that still remains on her chest where she was fused with her twin. However,as Dr Gordon Thomas,a paediatric liver surgeon from Australia who was part of the team that operated on the twins,says,It may begin to look more normal as she grows. However,its very likely that she will have only a small residual deformity that wont be very obvious under her clothes.

Like Thomas,Dr Rajivs other classmates who helped conduct the operation still keep track of Stuti and marvel every time they see her e-mailed photographs. Says Gujarat-based Dr Sanjeeth Peter,who operated on the twins heart,I always expected her to do well,basically because she has no other organ defects. She has done remarkably well,which speaks of the care she has been given at Padhar8230; Im afraid Ill have to take prior appointment from Stuti if I need to visit her considering her hectic social life! Which actually has also contributed immensely to her recovery.

Should things prove difficult,Maya has identified a residential English-medium school for Praveen. After he turns four,I might send him there. That way,Stuti can be alone at home and get used to things, she says.

One day of her visit,Maya brought along lunchpuri,subzi,papad and gul-guls pancake-like delicacies. As Stuti munched on the papads and gul-guls,Neha rushed to get the hospital dal-chawal. Maya made a feeble attempt to resist,before giving up.

But then again,it was a happy day. Maya was allowed to help scrub Stuti dry. Neha also taught her how to fix the chest guard. Bottles were brought out and Maya was told how to tell apart the hair oil,the moisturiser,the powder. As Neha allowed her to oil Stutis hair,Mayas face split into a wide smile.

Later,when Maya brought out the puris to feed Praveen,Stuti crawled over and took generous bites.

Doctors assure that Mayas fears notwithstanding,home is the best place for Stuti. Give her six months,and she will forget all of us, Dr Ashish Choudhrie,Dr Rajivs brother and a surgeon at the hospital,says. We will help with her education and any healthcare needs, adds Dr Rajiv.

All the expenses incurred in raising the twins initially and in Stutis care since have been met from small donations by the hospital staff. According to Dr Rajiv,Every Rs 5-10 or Rs 100-200 that we collected came to about

Rs 11,500 and we managed with that.

Stuti has been home only once,and that was for a few hours on Diwali last year. I made papads,puri and sabzi. I wanted the family to be complete, says Stutis grandmother Ramati,adding that she couldnt bear to see Maya pining for her daughter. The hospital authorities sent Stuti by car,with Neha.

She spent only a few hours,but I fed both my children together. She ran around the house. I didnt know how much I had yearned to see her in this house till I saw her here, Maya recalls.

In a corner of the hut,stands a framed photo of a child. Below it,in Hindi,Maya has written the name of the other daughter she almost hadAradhana Yadav. She was the more feisty one,the hospital and the mother attest,getting the better of Stuti in most fights.

Stuti doesnt call Maya mummy yet,and doesnt respond to the nickname Bittu she has given her. However,if the framed photo reminds Maya of a void left two years ago,other images are now slowly filling it up.

She cant help smiling that both Praveen and Stuti like her home-made papad. She gobbles them up at the hospital, Maya exclaims.

Recently,Praveen too indicated he was ready to welcome Stuti home. We picked some mangoes from trees. Praveen told me to keep a bag for Bittu, Maya says. My little man knows he has a sister waiting for us to get her home.

A teams belief

It was in June last year that Dr Rajiv Choudhries batchmates and friends from Christian Medical College,Vellore,came together for the surgery to separate Stuti and Aradhana.

When Dr Choudhrie first thought of attempting the procedure,he contacted them,and they in turn spoke to other experts. Funds were then arranged,from private organisations and individuals as well as the chief ministers office.

Around this time,Maya,who had given up the girls but would pay unofficial visits to see them,started dreaming of what then seemed impossible. Should the surgery be successful,she convinced her husband,they would get the girls back. The hospital authorities agreed,taking the parents detailed consent before the surgery.

Finally,six of Choudhries classmatesfrom CMCs MBBS batch of 1982and their professor in anaesthesia visited the hospital to evaluate the case. Many of these friends advised Dr Choudhrie to shift the girls to another setting,but he persisted. Equipment was taken on loan,piece by piece,including paediatric ventilators,pericardial patches,heart and lung machines,cardiac monitors,vacuum machines etc,with the team putting together an operation theatre and ICU. Other paediatric surgeons from Australia who had experience in similar surgeries were contacted.

On June 20 last year,a 12-hour operation was performed to separate Stuti and Aradhana. For the liver,Dr Gordon Thomas said,We did a novel manoeuvre called the Pringle manoeuvre. By temporarily obstructing the blood supply to Stutis liver,we were able to see a line of demarcation which helped us plan where to divide8230; This is how we were able to decide how much of the liver was Stutis and which bit was Aradhanas.

Maya waited for the duration of the surgery and later in a room provided to her next to the NICU.

Just when the worst seemed to be over,Aradhanas condition started deteriorating. Despite best efforts,she died on July 5,2012,after contracting a bacterial infection that spread to her blood.

Maya got permission to take Aradhanas body home for the firstand lasttime. Her last rites were performed amidst a huge crowd that had gathered from all over Betul.