Asha’s Story

19 December 2020

December is still storytelling month and this week a Hindi-speaking intercultural mediator tells the story of young Asha, who is confronted with many health problems...

Six years have already passed since I was first called to the hospital to mediate for the then six-year-old Asha, an Indian girl. Her body does not produce white blood cells and she has therefore been medically monitored since birth. Asha’s parents were very worried. The medical social worker helped them with their administration and advised them to follow the doctor’s advice closely. There was talk of a bone marrow transplant for which they might have to go to Germany. The parents did not seem to fully understand the situation and still hoped for a miraculous solution that would cure their daughter for good.

At a second appointment, six months later, the parents were told that they had the option of having another child through IVF treatment and then, if the match was right, to donate its bone marrow to Asha. With tears in his eyes, the girl’s father said that he would prefer to have a boy, so that he would have an heir and not have his brothers’ sons inherit all the land in India. The aid workers were baffled at his reasoning and wondered whether he understood the seriousness of the situation.

 After this meeting I lost sight of the family for a while, but two years later I happened to mediate at the gynaecologist’s for Amma, Asha’s mother. Amma told me that she had had a daughter through IVF, but that the child’s bone marrow was not a good match for Asha’s, so the transplant had not taken place.

For a year now, I have been mediating for Asha at the hospital again. She has now also been diagnosed with type I diabetes, which means that she needs extra monitoring. She gets insulin and follows a strict diet plan. Amma is now divorced from Asha’s father. Their daughter’s complicated health situation caused too much stress within the relationship. Asha’s father has moved to another city. He still comes to visit and wants to be involved in the treatments, but because no longer lives with the family, that is not so easy. Amma regularly indicates that she is having a hard time on her own with the children, especially now that the diabetes treatment has been added to the challenges. It took a long time before Amma had mastered the insulin injections, and all the while Asha stayed in hospital. Even now, Amma is still very emotional and keeps repeating that her child will not be able to cope with so many injections. Before, Asha already received an injection every day to produce white blood cells. Now she also must inject insulin four times a day and Amma is deeply sorry about that.

More bad news followed: at Asha’s annual puncture, the doctors recently diagnosed that she is in danger of developing leukaemia, which means that the bone marrow transplant was now becoming urgent. However, the right match had still not been found. The interview in which this was announced was difficult for Amma, but the doctor could not restrain her tears either. I myself found it very difficult to convey this news and even at home I could not stop thinking of the case. Fortunately, the medical team were understanding: they knew very well that it was difficult for me to be the one who had to report the bad news directly. When I came out of the consulting room, I saw Asha playing in the waiting room. Something like that touches you, especially if you have been following a family for years: the contact inevitably gets a personal touch.

After two months of admission, including the diabetes education period, Asha was allowed to return home. She had to come back to the hospital every fortnight for a check-up of both her white blood cells and her diabetes. During the 2020 COVID-19 pandemic, I received a call: the medical social worker told me that a very important conversation with Asha’s family would take place in another hospital. The parents would receive an explanation about the bone marrow transplant. Yes, this was good news for the parents. For years they have been waiting for a transplant, hoping that it would cure their daughter. The doctor, the social worker and the parents were present at the appointment. The explanation was very complex, but the doctor was very patient and explained everything very calmly. I also tried to translate it to the parents as simply and calmly as possible. The doctor indicated long periods of admissions and treatments. Amma got upset when she heard that her daughter might have to stay in hospital for up to a year. Asha’s dad kept saying that he understood everything and said repeatedly to Amma: “They have kept us waiting for so long; just nod yes to everything so that they can go ahead with the operation”. The doctor explained that because of the COVID19 measures, a transplant might not be possible until the summer. The father almost exploded with anger when he heard this. He said: “We have been waiting for this transplant for years and now the coronavirus shows up. We really are unlucky!” The doctor and the social nurse tried to calm the parents by saying that they should be happy that a donor had been found and that the treatment can be carried out. This creates new perspectives. I gave a lot of emotional support to the mother because she felt quite lost. The long explanation had clearly been too much for her. At a conversation that took place a month later, Amma seemed more at ease. Asha was there as well because the doctor wanted to meet her and examine her. This time the practical side of the matter was discussed. The testing would start soon and at a follow-up appointment, in two months’ time, dates would be set for the admissions. The parents seemed relieved: finally, the long-awaited treatment could begin. Amma looked at Asha with hope in her eyes that she would finally get better.