Monday, 9 May 2016

To a hospital somewhere in the UK


I wrote this letter when Rumer was 10 weeks old and in PICU, after an online friend shared her letter from a major UK hospital denying treatment for her unborn son with trisomy 18. I didn't plan to send it. The child was eventually given full treatment by another UK hospital. Names have been changed to protect the innocent (and not so innocent).



Dear Major Hospital in the UK,

You say in your letter to the Jones family that it is in the best interests of their son Ben to offer nothing but palliative care if he is born alive. You believe it is in his best interests to die. To die not because of his underlying condition (which he may well do, even with the best you could offer) but to die because you refuse to treat him, refuse to use the skills and equipment you possess to attempt to preserve his life. May I ask why?

I confess I am puzzled, because 10 weeks ago, a hospital very like yourselves - a major UK hospital with a children's hospital attached - resuscitated and ventilated my daughter who, like Ben, was antenatally diagnosed with trisomy 18. They, like you, queried whether it was in 'the child's best interests', whether it was ethical. But unlike you, after considering the evidence, they decided that it was. I cannot see how it would have better served my child's interests to have died at birth, to be buried now in our garden - in the grave we had prepared - than to have spent 10 weeks and counting being loved by her family, enjoying life.

Better dead than intubated. Really?

I wonder why you consider it not in Ben's best interests to have a chance to be alive. If you worry that his quality of life will be impaired by his trisomy 18, both I and many other parents of babies, children and adults (yes adults) with trisomy 18 are happy to reassure you on this point. As you know, research also reports an excellent quality of life for people with trisomy 18.

Perhaps you worry that the burdens of intensive care would be too much for Ben. That the undoubted pain and suffering intrinsic to neonatal intensive care would not be 'worth it'. That he would suffer for minimal benefit, to live a shortened life with significant neurodevelopmental disability, if he survives to leave the NICU at all.

Don't worry! More babies with trisomy 18 leave the NICU and go home than babies born at 23 weeks gestation, and they have a shorter length of stay. This is true even in hospitals where full treatment is denied once the diagnosis is confirmed. Of course, if appropriate treatment is offered, even more survive to go home.

See: we do leave!

As for 'shortened life': well, of course Ben's life is likely to be shorter than average. The oldest person with full trisomy 18 was 39 years old [please note that this is an error: there is a report of a 50-year-old, but I was unaware of this at the time] as opposed to the 70 or 80 years that most of us can look forward to. But there is value in a short life; there is joy. Morally and legally, the obligation to prolong life even when it is likely to be short is well-established.

I don't think we'll even discuss the neurodisability angle. We were supposed to have moved on from 'better to die than live with intellectual disability' several decades ago.

Maybe you have other worries, ones you can't admit to, about finances, about limits on care. Where does it stop? Maybe you worry about being seen as 'mavericks', about scrutiny and criticism from colleagues, especially if there is not a good outcome. You know these are not acceptable reasons to deny care, but they're there. Let them go! Ben's life is not worth less money than another child's. There are limits on care for every child, and they can be discussed. And 'mavericks', or pioneers? Others have already done this. Lead the way with them or follow behind!

Because, Major Unnamed Hospital, times are changing. Parents will no longer believe you when you say nothing that can be done. To paraphrase an eminent neonatologist, they only have to look online to find out that you're lying! Because something can be done, and is&nbsp being done. In Japan, in the US, in the UK, children with trisomy 18 are living longer and longer. Living longer because they are treated: treated as valuable, human and worthy. No longer do babies die a terrible death (and respiratory distress is a terrible death) while doctors deny them the breathing support which could alleviate their distress. There are even places where such 'palliative' care is considered unethical, where if you choose that for your baby you must go elsewhere.

I hope you will reconsider, but if you do not, I hope you will at least acknowledge that your decision is not based upon a genuine regard for Ben's best interests, that your decision is your own, made for your own reasons. That the evidence and the lived experiences of individuals with trisomy 18 and their families do not support you.

Short, happy lives!

3 comments :

  1. Beautifully said. The Living with trisomy 13 community thanks you also on behalf of the Trisomy 13 Patau Syndrome families searching for future care in the UK.

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