As I sit here in my dimly lit office this evening, it's more than my toes that feel a certain chill.
|We must work towards unbiased support during NIPT
I've received a roundabout press release from the UK Screening Committee with recommendations for the implementation for the staged rolling out of the Non-Invasive Prenatal Tests, or #NIPT. I'm loading it into this blog, right here 2 hours ahead of that watershed.
It's embargoed of course, but I can set the timer just over here on the right of the screen => to bring this blogpost into your inbox minutes after that embargo lifts at midnight.
Such secrecy. Such planned drip-feeding of information to the public. So much goes on behind closed doors.
Of course we knew this was coming. Of course we knew the test would be rolled out as standard, albeit in phases. The press release is not a shock.
Yet still I shed a tear when I read it. It says nothing, it's wishy washy, but it is symbolic. It's not even about the test. It's what surrounds it.
I fathomed that it is because I know that however late I go to bed tonight, however tired I am when I wake and however busy the school morning begins, and however hard I try not to turn on a radio or look at my social media feeds, at some point after I wake I will see a jubilous headline somewhere.
Someone will send me a link. Or a retweet. Or mention it to me at the school gates.
It will claim:
'Miracle new test will cut miscarriage rates'.
'Safer, earlier test detects chromosomal abnormalities'. 'NHS to roll out new test to women at risk'.
'Disability activists have concerns.'
'Detect this debilitating disease' (Telegraph Jan '16)
'Detect this debilitating disease' (Telegraph Jan '16)
And I will spend the day justifying my daughter's life.
And explaining that as miscarriages lower, terminations will increase.
I will see the public misunderstand that the test is not diagnostic, it will be glossed over that it does not give a definitive answer, and an invasive procedure is still needed to confirm a diagnosis.
Language and terminology will make me shudder. My daughter was not a 'risk', and neither was she 'abnormal' in any way. She is what she was meant to be. Down's syndrome has been around since the beginning of time.
And militant activists we are not - rather parents with heart, those who know, the true experts, wanting the best for all and willing to share and educate and support, whatever the decision others take.
My head knows we are inching forward with key medical professionals to provide training to enable them to give truly unbiased support. Working together is vital.
My head knows the learning disability nursing teams are on standby to help new parents.
My head is proud that the debate surrounding the ethics of a screening programme designed to target one particular genetic group is in the public domain now, that questions are being asked.
I know medical professionals are realising that parents must be given more time to reach a decision, that they cannot be coerced or bullied, and that they should not be repeatedly offered a termination until the 40th week of their pregnancy once if they make a decision to continue.
Change is happening.
But still I sit here with a heavy heart waiting for those hurtful headlines and the terminology that will sting. I think of countless other families, more importantly those reading and listening who have Down's syndrome themselves, who will smart at the celebrations they see.
Tomorrow (or today as you read this) this will explode on our screens. And I weep for the much wanted babies lost, each one of them who would bring as much unique wonderment to the world and their families as Natty does to ours. I weep for women put through additional stress with little counselling at every step of the process.
So let's continue to educate and be the change we wish to see in the world, however hard that may seem. Let us share honestly the joys and challenges of bringing up a child with Down's syndrome to allow others to make truly informed decisions.
Let us respect the different paths and decisions of all women. Let's continue to educate the medical profession and the journalists to help them update their knowledge of Down's syndrome.
- Watch out for a BBC1 documentary coming soon, hosted by Sally Phillips, exploring the way NIPT is being implemented. We have played a small part in the making of this important programme.
- Read Ultimate Choice of Infanticide - a closer look at Ground E abortion and the Groningen Protocol *Trigger warning: Late term abortion*
- You can read an honest and touching post from a woman who understands all angles of the screening process here. Mother Scuffer writes Antenatal Screening on her blog Motherhood Journeys.
- You can listen to You and Yours my Radio 4 interview on the subject here at 25 minutes.
- I was live on LBC again this morning talking to Nick Ferrari on the subject.
The press release from the UK Screening Committee:
Introducing Non-Invasive Prenatal Testing (NIPT)The committee recommended that Non-Invasive Prenatal Testing (NIPT) be introduced as an additional test into the NHS Fetal Anomaly Screening Programme (FASP) as part of an evaluation. Ongoing monitoring and evaluation will mean that the test is rolled out across England in such a way that the screening programme can be altered if necessary in light of any real life findings. FASP offers screening to women in pregnancy to find out how likely it is that their baby has Down’s syndrome, Edwards’ syndrome, or Patau’s syndrome. The new test is more accurate, meaning that fewer women will need unnecessary diagnostic tests, which can potentially mean a small risk of losing their baby.
|You can vote for Downs Side Up in the
Health and Social Care section here