Noot, the first one from the left
Noot came to Sarnelli House in January 2010. Her Aunt and cousin came to see Fr Shea while Noot was in hospital. Noot was 16 years old and had only taken ill in the beginning of January,previously she had been a normal happy 16 year old girl. Her father had died of AIDS many years ago and her mother has HIV. When Noot’s mother remarried, Noot didn’t want to stay with her as according to her Aunt she was scared of her new stepfather. So she came to live with her aunt when she was 4 years old. Noot lived with her 4 cousins, 1 girl and 3 boys and she became very close to her new family. Noot’s aunt recalls that Noot was definite and deliberate in all things she did such as eating, doing her homework, and helping with the cleaning. She had many friends at school and was doing well. In January 2010, Noot became sick. Initially she was unable to eat for vomiting, she was taken to see the doctor numerous times but she did not improve. Eventually she was taken to the Provincial Hospital in Nongkhai, about 2 hours drive from Noot’s small village home. There she was diagnosed with chronic renal failure and HIV. The family learnt that she would need dialysis for the rest of her life and they felt that they could not give her the care she would need; they were a long way from the hospital and had no expertise or people to care for Noot. When the family approached Fr Shea, they did not do this lightly as they loved and cared for Noot and during the course of Noot’s illness they were continually supportive and loving of her. Of course Fr Shea accepted Noot into Sarnelli House with open arms. She was still in hospital at this stage and was to face one of the many ordeals that punctuated her short yet fatal illness.
Noot was to commence continual ambulatory peritoneal dialysis (CAPD) for her renal failure, she had a Tenkhoff catheter inserted in her abdomen, that was to be accessed 4 times a day, to act as her kidneys. Fluid was drained out measured and then fluid drained in. Noot was initially haemodialysed at Nongkhai Hospital but when she was also diagnosed with HIV there was a fear that her blood would infect the haemodialysis machines so CAPD was begun instead. The consequences of commencing CAPD were huge. This was to be a lifelong procedure with the aim that she would eventually learn how to do the dialysis herself. The risk of infection and subsequent peritonitis was high, and the chance of cure by kidney transplant was nil as Noot also had HIV. Noot’s kidney failure preoccupied her life and the lives of her family and the Sarnelli House staff. Before the CAPD began all the housemothers of Sarnelli House came to Nongkhai Hospital to the dialysis unit to learn how to manage the dialysis. This was done in the course of a morning to staff who had had no nursing experience, but who took up the challenge with a mix of trepidation and conviction. Noot’s condition then deteriorated over the course of a few days and the dialysis had to start in hospital. Noot was in a mixed ward and the nursing staff of the ward did not know how to do the dialysis so a member of the newly trained Sarnelli staff stayed with Noot, swapping shifts after a day with another staff member. Noot’s stepfather and mother also stayed with Noot and they shared in her care. Noot’s condition was precarious at this stage, she had pneumonia and had a breathing tube inserted, she was terribly restless and agitated. She couldn’t eat and she was tied to the bed by her 4 limbs for almost 4 days. Her heart stopped twice and she had to be resuscitated. She stayed on the crowded ward with the Sarnelli staff doing her dialysis every 2 hours and providing all her care for almost 10 days. Unbelievable Noot came good and she was discharged back to Sarnelli House still with the dialysis needing to be done every 2 hours.
Noot stayed in the clinic room opposite Sarnelli House while her room at Sarnelli House was prepared. Her mother and stepfather and her little step sister now had the chance to go home for a while. Her aunty and cousins visited regularly and bought treats and lots of encouragement to Noot. During the time of Noot’s admission to hospital, Sarnelli House’s outreach team facilitated Noot’s stepfather and stepsister to have an HIV test, her stepfather tested positive, but her 8 year old sister did not. He was immediately started on ARV medicine.
Noot settled into life at Sarnelli House and made a recovery of sorts. She walked to the big Chinese Feast put on by friends of Sarnelli House and joined all the other children and even ate a little. She made friends with the teenage girls from Nazareth House and they visited her room frequently often staying overnight and watching movies together. They also encouraged her with her tablets and explained that they had been through the same thing and she would get well as they had. She had a few outings to Nongkhai where she applied her makeup meticulously and dressed up fastidiously. Her school friends came to visit her. She celebrated Songkran by sitting in the front of the truck in air conditioned comfort while it was driven around Nongkhai with a bunch of rowdy kids in the back throwing water and experiencing the absolute fun and madness of Songkran. She had regular appointments at Nongkhai hospital to follow up with her dialysis.
Taking tablets was one of the biggest challenges for Noot, she had to take up to 6 tablets 4 times a day and it was a constant battle to keep them down, she was already diagnosed with oral thrush but found it hard to take the tablets that could treat it. Every strategy was used but nothing lasted to relieve her of the continuous drudgery and indignity of dry retching and vomiting. The need to start to treat Noot’s HIV was becoming more paramount as the fear of further deterioration caused by AIDS could not be ruled out. There were many setbacks in getting Noot to Khon Kaen, 130 km away to see the HIV specialist, however in March she was started on more tablets, but these were her lifeline to manage her HIV.
Noot soon after started to go inward and she seemed to becoming more resistant to encouragement as she refused to take her tablets or continually tried to negotiate to take them at a later time. She ate less food and what she ate was not helpful for weight gain or nutritional value. She became less involved and participated less in the activities and life outside her room. She started to talk about wanting to die and it wasn’t till her funeral that her Aunt recalled her saying that she would like to die so she could start her new life. Her Buddhist belief in reincarnation must have given her some hope for a better future.
The dialysis continued 4 times a day now, but so did the fevers, and her dialysis fluid was shown to have bacteria in it. She had antibiotics injected into her last bag of fluid for the night for 2 weeks. She had 2 episodes of this in 2 months. In the last 2 weeks of her life she spent 10 days in Nongkhai hospital in the cramped and crowded mixed ward and hardly ate anything and intermittently could be coaxed to take her tablets. She was discharged home on Monday still unwell not eating or taking tablets and on Tuesday she went to Khon Kaen to see the HIV specialist. He did not change any treatment but acknowledged the difficulty of Noot’s situation and spoke about taking a palliative approach to her treatment, but agreed that we persevere with her tablets and food intake. That day was a long day, leaving Sarnelli at 6am and getting back at 8pm, doing her dialysis in the back of the van. Noot wanted to eat Japanese food, and we took her to a big shopping mall where she enjoyed the taste in her mouth but did not swallow any of it. By that evening she had taken her tablets with little problem. The next day, her last day, Noot wanted to see the farm where her mother and stepfather and stepsister were living and working. It is just down from Sarnelli House so the family could be near Noot, and Fr Shea had given them a house and employed them to take care of the pigs, chickens and grow vegetables. Noot visited them and the day seemed to be a turning point, she was more interactive and able to eat.
The next morning she was dead.
Noot coped with the indignities she suffered with great dignity and composure that was at odds with the thin, deteriorating body she occupied. She maintained her 16 year old self while all around her, her world was crumbling. Separated from her family and given over for care to strangers, being diagnosed with a disease that kills, and having her young body disfigured with a tube in her abdomen that she knew would stay with her for the rest of her life must have turned her world upside down. The dreams and the friends of her girlhood must have seemed like they were vanishing before her eyes. The constant coaxing, reasoning and desperate pleas for her to eat and take her tablets took little visible effect on her, but on her spirit they must have fallen like blows as she tried to get her body to do what everyone wanted it to do. She had good times as well, her friendship with Wan Pen another 16 year old with HIV who helped cared for her and slept in the same room with Noot and who gossiped, listened to the latest Thai pop songs and watched Thai soapies with her. On the few outings that Noot went on she and Wan Pen would put on their best clothes and Wan Pen would help Noot with her makeup and hair and Noot would emerge from her room proudly smiling and frail as a newborn foal, with Wan Pen beside her to help her climb into the van. Noot’s trust and reliance on K. Noi who took her to all her hospital visits, bought her tempting food, and with abundant good humour and patience visited her every day in hospital and out. K Noi’s was one of the only ones who could get Noot to take her medicine when she had decided she wouldn’t, and she did it with a genuine love for Noot that was positive and empowering. Noot’s short stay at Sarnelli House was bitter sweet, her life touched ours at her most vulnerable, and we only saw a glimmer of the woman she could have become.
For me, Noot coming to Sarnelli House bought on a terrible sense of powerlessness as I wondered how to clinically handle a young girl with chronic renal failure needing dialysis, as well as AIDS – two complicated illnesses at the best of times and in the best of health facilities. And here were we in outback Thailand, on a dusty, red dirt road surrounded by poor villagers herding buffaloes and waiting for the rains to come to be able to plant their rice. Working with untrained staff and the fractured care of one hospital managing Noot’s renal failure and the other her AIDS and separated by 170km, was daunting. The sense of having no control of the situation as clinical decisions were made in another language, and the staff took it all on in ignorance of what the risks were for Noot if we got it wrong, was causing sleepless nights. Stopping the constant and fearful comparisons of how Noot could be managed better in another country with the best health care was difficult and something that I had to consciously refrain from, as it was futile and lead nowhere. So I was carried along, as there was nothing else to do but trust, and work with the resources we had, as well as the incredible good will and love that is engendered when a sick child comes into our midst. Seeing and interacting everyday with other children who have been in similar precarious situations made accepting Noot and pushing down the fear possible. At least we would try with what we had, to give Noot a better life. But for Noot it wasn’t possible and though I was shocked at her sudden death I also felt a sense of relief for her and for myself. We would not have to battle against the slow and horrible decline caused by AIDS, Noot was free and whole now, and she had shared with us her essential self her dignity, her composure, her stubbornness and her sweetness and this is what we will carry with us in our hearts.
Kate
May 2010
