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Blue-Eyed Baby Will and the Right to an Informed Consent

Photo credit: freenz.org, screenshot.

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As blue-eyed baby Will and his beleaguered parents and supporters continue to endeavour to advance their legitimate cause, they have been accused of refusing to help their son by not agreeing to the demands of the establishment.

Will’s parents are not refusing help for their beloved son. They want better help than the current system will permit or provide, despite there being no good reason for that, other than the intransigence of all parties with the exception of Will, his parents and supporters.  They are instead being subjected to controlling external forces.

“Medical informed choice is essential for a physician meeting their fiduciary duty when proposing medical and surgical actions, and necessary for a patient to consent or cull the outlined therapeutic approaches. Informed choice, as part of a shared decision-making model, allows widespread give-and-take of ideas between the patient and physician.”  

informed choice in medical consent – Search (bing.com)

informed choice in medical consent – Search (bing.com)
They are not refusing treatment.

They are working with the establishment. They are cooperating. But they want better treatment based on their research, their understanding, their unanswered questions and, overwhelmingly, their love for their son.  The establishment will not even consider their suggestions or their diligence in finding alternative blood availability.

Our right to make choices for our bodily autonomy has been so eroded throughout the great Covid debacle that it is hardly surprising that the issue arises in this case – an issue that has been one of concern and contention for many years, and one that comes up over and over again for those of the Jehovah’s Witness faith.

Let’s go back for a minute to the early days of the AIDS epidemic when autologous transfusion was used.

Some definitions:

Autologous transfusion:

The collection and transfusion of blood by the person for that person ie the donor and the recipient are the same person.

Allogeneic transfusion. Where the donor and the recipient are not the same person.

Autologous transfusion | The BMJ

Autologous transfusion | The BMJ

Now it is clear that Baby Will cannot give blood for an autologous transfusion. BUT the existence of the option to have specific blood is not a new phenomenon and cross-matched volunteers are on standby for Will.

If there were no history of specific blood donation via autologous collection, then the powers that be may have a stronger argument. But in a case like this, where the unknown effect of the non-vaccine Covid vaccine remains of huge concern, then why should the caution exercised in the 1980s during the AIDS epidemic not be permitted as a valid concern in this case?

And what about the contaminated blood given to innocent recipients in the 1990s who contracted Hepatitis C through the use of unscreened blood through the New Zealand Blood Service on the Labour Party’s watch?

Hepatitis C is a blood-borne virus that affects the liver. It is transmitted when infected blood gets into another person’s bloodstream. Some people clear the virus spontaneously however the majority of people do not clear the virus and will have an ongoing or chronic infection.

The hepatitis C virus was identified in 1988. As a result of this finding it became clear that it was the major cause of the hepatitis known as Non-A, Non-B hepatitis.

Way ahead on Hep C blood product infections | Beehive.govt.nz

Way ahead on Hep C blood product infections | Beehive.govt.nz
A $30 million package to provide one-off payments to an estimated 550 people is part of a way forward for people who were infected with hepatitis C through the New Zealand blood supply, Health Minister Pete Hodgson announced […]

“An estimated 30,000 New Zealanders are living with hepatitis C,” Pete Hodgson said. “It is a challenging condition to live with and manage for anyone, but it is an especially distressing diagnosis for the small minority of people who were infected through the blood supply before screening began in 1992.” (emphasis added)

Way ahead on Hep C blood product infections | Beehive.govt.nz

Way ahead on Hep C blood product infections | Beehive.govt.nz

So they didn’t test for Hep C for four years during which time untested blood was happily transfused into the innocent, who became victims of what could be described as institutional neglect OR a lack of knowledge at the time.

The question regarding the New Zealand Blood Service testing for Covid antibodies pre-transfusion is answered on their site.

Do you test for COVID-19?

We do not test for the presence of the COVID-19 virus. However, NZBS routinely tests all blood donations for viruses that pose a health risk to the recipient. COVID-19 is a respiratory virus that is not known to be transmitted by transfusion which is why a test is also not required.

COVID-19 and Donations | New Zealand Blood Service (nzblood.co.nz)

COVID-19 and Donations | New Zealand Blood Service (nzblood.co.nz)
So, just as in the Hep C catastrophe, blood transfused into Baby Will won’t even be tested for Covid. The same lack of available knowledge at this time may be the same as the Hep C situation. We don’t know.

Will’s parents are endeavouring against all odds to do their very best for their son. If I were in their shoes, I would do exactly the same thing. For many years I worked in theatre as a cardiology technician when we operated on adults, babies, and children. We did open-heart surgery on tiny darlings such as baby Will. I have seen parents wracked with every emotion known as the issue of transfused blood and blood products has been debated. I have witnessed tragic outcomes.  I have also been a Laboratory Technician in Serology, using the diagnostic examination of blood serum, especially with regard to the response of the immune system to pathogens or introduced substances. ie testing for antibodies.

With no screening for Covid-19 in Blood Service blood pre-transfusion, we run the risk of another Hep C fiasco. The technology to use the blood of Baby Will’s supporters and volunteers is the same as that for all other blood collection and its use should not even be in question. The status quo did not deliver in the case of Hep C, and it may very well not deliver in the case of baby Will. No one knows.

The New Zealand Code of Health and Disability Services Consumers’ Rights provides the following 10 rights:

Right 1

The right to be treated with respect.

Right 2

The right to freedom from discrimination, coercion, harassment, and exploitation.

Right 3

The right to dignity and independence.

Right 4

The right to services of an appropriate standard.

Right 5

The right to effective communication.

Right 6

The right to be fully informed.

Right 7

The right to make an informed choice and give informed consent.

Right 8

The right to support.

Right 9

Rights in respect of teaching or research.

Right 10

The right to complain.

The Code and Your Rights – Health and Disability Commissioner (hdc.org.nz)

The Code does not, nor should not, mean that a parent’s rights should be usurped to the point that baby Will is likely to be placed under the guardianship of the court for medical care.

Te Whatu Ora then wants the court to appoint the doctors as agents of the court for medical care, and the parents agents of the court for all other care.

Supporters outside High Court hearing on parents refusing vaccinated donor blood for baby | RNZ News

Supporters outside High Court hearing on parents refusing vaccinated donor blood for baby | RNZ News

No one knows what is going to happen with Covid in the blood. Let’s err on the side of caution and use the option that the parents have put together themselves in the face of overwhelming opposition and lack of empathy. Theirs is not the refusal in this case.

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