Nazneen Dubash update

In response to our public appeal issued in early March 2009 seeking financial support for the treatment of nine-year-old Nazneen Dubash who is suffering from primary pulmonary hypertension (PH), we received generous support amounting to Rs 4,87,556. We now provide an update to all donors about her medical status.

Nazneen was admitted to Great Ormond Street Hospital (GOSH) and Institute of Child Health, London, UK in the third week of March 2009 under the treatment of Dr Ingram Shulze Nicke and his team. Their diagnosis confirmed that Nazneen was suffering from PH. Her parents were informed that there was no question of stopping the medication that she was currently on as her present condition was sustained only because of this medication.

Nicke reiterated what Dr Bharat Dalvi had informed the parents in India, that PH is a progressively deteriorating condition which medical science does not yet fully understand or know how to cure as of now. They were told that the disease was somewhat like cancer, though the medical fraternity has not yet understood it in its entirety. The endothelial cells lining the inside of the pulmonary and other lung arteries keep multiplying instead of dying out as they normally should, due to which the arteries narrow and harden, ultimately leading to undue pressure on the heart which thereafter collapses, leading to death.

That Nazneen has been diagnosed at such a young age has both positive and negative implications. The positive aspect is that normally the disease is diagnosed when in an advanced stage and patients consult PH specialists when their hearts are almost giving out. Such patients are then put on heavy last line medications such as Bosentan, Prostacyclin, etc which have much higher side effects.

The negative aspect is that she has been diagnosed so early that it was difficult to plan a line of treatment. It was finally decided that as the condition is not curable, the objective would be to relieve the symptoms of the disease, mainly reducing the strain on the heart. With that in mind, Nazneen is currently on the best possible medication for the condition with the least side effects (amongst those used to treat PH).

The normal line of treatment in such cases is that the patient is monitored every three months with an echo cardiogram and every two years with a Cardiac Catheterization Procedure (CCP). As the CCP is considered very risky with the hearts of PH patients, Nicke decided not to conduct one at present. He was relatively happy with the one performed in Bombay at Nanavati Hospital but said that certain data was missing which he had to infer from the reports. He said that a wait and watch policy would be best as Nazneen is an early patient not requiring heavy medication now nor hopefully a transplant in the near future. It was only by keeping her under continuous observation that they could determine the line of treatment. Since Nazneen is attached to GOSH, she would have the advantage of immediately benefiting by the results of research.

Nicke has counseled Nazneen’s parents to resume all the child’s normal exertions such as exercises, sports, etc up to a limit. Physical fitness is very important to help her face the stress the disease may cause at a later date. He told them that two years later he would himself perform the next CCP on her. They have been advised to remain optimistic as there is extensive ongoing research in this field and a few years down the line there was bound to be a breakthrough in the understanding and cure of this disease.

My colleagues join me in extending our sincere gratitude to all those who contributed towards the treatment of this young Zoroastrian child.

DINSHAW K. TAMBOLY

Managing Trustee, WZO Trust

beedee@vsnl.com