When Valentina lost her newborn baby, Angelo Ray, in July 2016 and aged just 8 days old, she asked the hospital if his organs could be donated so that another baby could live. This was something the hospital had not considered before. Due to the publicity around organ donation, an adult in intensive care might anticipate a conversation about donating organs; however, the topic is difficult to broach with the parent of a newborn baby.
A week before Valentina’s due date she had collapsed and stopped breathing. Her husband called 999 and managed to resuscitate her by following instructions from the call operator. Until then, Valentina’s pregnancy had been without complication, and she had planned to have a water birth at home. Angelo was ultimately delivered via an emergency Caesarean section before Valentina was rushed away for vital blood transfusions.
The staff at King’s College Hospital’s neonatal intensive care unit (NICU) had done everything they could, but Angelo Ray’s brain had been badly affected by the lack of oxygen, and he would never be able to survive without life support. An MRI scan showed no brain activity. Valentina described to the BBC how she had an idea to donate Angelo’s organs so that “this horrible tragedy could serve some purpose”. The hospital’s organ donation team were unsure if it would be possible. There are extra challenges associated with removing organs from such a small baby and transplanting them.
Organ donation from a neonate (a baby less than four weeks old) is very rare. According to NHS Blood and Transplant, just 40 babies this age have become donors in the last ten years. Twenty-six neonatal babies donated tissue, such as heart valves and corneas, while fourteen donated organs or both tissue and organs. While certain organs could only be used for other babies, the kidneys, for instance, would be suitable for an adult because they can grow. Heart valves can be stored for up to ten years and potentially help multiple people. These babies have therefore helped save the lives of patients of all ages.
Thanks to greater public awareness and expertise around retrieving and transplanting smaller sized organs, the number of neonatal organ donors is increasing. NICUs are more willing to embrace having conversations about organ donation, and staff at King’s College Hospital will now routinely talk to parents making end-of-life choices about the prospect of organ donation.
In Autumn 2020 the law around organ and tissue donation in Scotland is changing. An ‘opt-out’ system is replacing the current ‘opt-in’ system. This means that if an individual dies in circumstances where they could become a donor, and have not recorded their donation decision on the NHS Organ Donor Register, it may be assumed that they have agreed consent to donate organs and tissue for transplantation. This new legislation is more specifically a ‘soft opt-out’ scheme, meaning families will be asked about their relative’s view on donation and make the final decision.
This policy will apply to most adults living in Scotland. Children under the age of 16, adults who lack the capacity to understand the new law and those who have lived in Scotland for under 12 months will be exempt. They will be unable to donate unless they, or someone on their behalf, explicitly gives permission. Only around 1% of people die in circumstances that lead to the possibility of organ donation, as reported by Organ Donation Scotland.
This legislation is aimed at reducing the number of people waiting for life-saving organ transplants. The latest figures from NHS Blood and Transplant show that there are currently 6125 patients on the waiting list for a transplant in the UK, of which 561 are in Scotland. Since a similar law was introduced in Wales in 2015, the organ donation consent rate increased from 58% to 77% in 2019, but does an opt-out system really increase transplants?
Some argue that this opt-out model of organ donation creates a group of non-donors who previously did not exist. In the current Scottish system, there are two groups of people: those who have opted in to be a donor and those who have done nothing whose families will ultimately be asked to decide. However, in Wales there are now effectively three groups of people; the third group being those who have registered their wish not to be a donor through opting out. In an opt-in system, this group were still potential donors, depending on the wishes of their family.
It is difficult to assess whether opt-in or opt-out schemes influence the donation rates of countries across the globe due to variations in their policies. Singapore and Austria, for instance, have a ‘hard opt-out’ system where those who have not opted out are presumed to be willing to donate organs irrespective of their families’ wishes. These countries have seen increases of up to 25% in the organ donor rate; however, is it ethical to remove a family’s autonomy in this way?
In Israel there is a priority incentive scheme whereby those who have agreed to donate their own body are given priority on transplant lists should they require an organ in the future. Alternatively, we could take ideas from Spain, hailed an opt-out scheme success story, by introducing other changes. These include greater funding for transplant programmes, better infrastructure and more staff working to build relationships with prospective donors before their death. The issue of organ donation is pertinent – every day across the UK, someone dies waiting for a transplant.
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