Telemedicine : Consultations: Ghanbarzadeh

Dear Dr. Tabatabail,
Please see attached letter from Dr. Aurora on Mahboobeh Ghanbarzadeh.
Should you require any further information, Dr. Aurora's email is:
p.aurora@ich.ucl.ac.uk
I hope this information is useful to you.
Yours sincerely,
Lucy Robinson,
Cardiothoracic Transplant Secretary

_______________________________________
Disclaimer: Great Ormond Street Hospital for Children NHS Trust

Thank you for your letter about this girl. It is clear that she is now in a very difficult situation and I can understand that her parents must be very distressed. Unfortunately, I think our options here are quite limited.

Firstly, I am afraid that there is no chance of her receiving a lung transplant in Britain. The reason for this, is that we have a great shortage of donor organs in Europe at present. The majority of British children who are waiting for lung transplants never receive them, in other words, they die before organs become available. When organs are available, the law obliges us to offer them first to children within Britain and then to other children within Europe. Only if there are no suitable recipients within Europe can they then be offered on to a child outside Europe. Other European countries have very similar laws. Whilst this is very hard for Mahboobeh, I am sure you see the ultimate fairness of this system. It is designed, amongst other things, to ensure that the allocation of organs is not influenced by the financial circumstances of the recipient’s family.

I think it would be very unlikely that Mahboobeh would be able to receive a lung transplant anywhere else in Europe. It certainly is possible that she could receive a transplant in the United States and I would be happy to give you the names of the major paediatric transplant centres in the United States. Before doing so, I think you need to counsel the parents quite carefully about this. Successful lung transplantation is dependent not only on highly specialised and highly skilled intervention at the time of the transplant, it also requires very careful specialist monitoring afterwards. In practice, this would mean that Mahboobeh and her family would have to relocate to the United States prior to her transplant and then remain there for the rest of her life. This obviously has major implications for the family, not least financial. Given that the outcome following lung transplantation is not very good, with an average survival of only about 4 years, I am not convinced that this is worthwhile. However, I would be happy to give you more details about US centres if you wanted.

The other point to consider is whether we can make some adjustments to Mahboobeh’s medical regime, in order to improve her quality of life and her life expectancy. It appears from your letter that you are already treating her aggressively, but it may be that some minor adjustments are possible. If the parents are willing to explore this option, we would aim to bring her over to our hospital for two to three weeks. During this time, we would attempt to improve her condition by giving her a course of antibiotic therapy, intensive physiotherapy and nutritional support. We would also give advice regarding treatment that can be continued at home, making allowances for what would be practical in Iran. We would be happy to offer this service, but I would caution that the biggest difficulty would be the journey to and from London. I suspect that Mahboobeh’s current condition would make air travel somewhat hazardous. If Mahboobeh’s family wish to explore this possibility, please do let me know and I will then forward you more information about how much this treatment is likely to cost.

I am sorry that I cannot be more positive, but I do feel that the advice I am giving you is realistic. Cystic fibrosis is a terrible disease and we have learnt over the years that the best hope for these children is to diagnose it early and treat it aggressively from the beginning. Once children reach Mahboobeh’s advanced state, our options are really very limited.