Trudy is part of our happy a nd ful­fill­ing fam­ily

Bring­ing up a child with Down’s Syn­drome, one must con­sider the no­tion of ‘choice’, says Lau­ren Eliott Lock­hart

The Scotsman - - Friends Of The Scotsman / Health And Social Care -

When I learned of the new Non-in­va­sive Pre­na­tal test (NIPT), I had al­ready given birth to our daugh­ter, Trudy, one of the 750 ba­bies born each year with Down’s Syn­drome in the UK.

My ini­tial re­ac­tion was that this test was good be­cause it was non­in­va­sive. Par­ents would be at a much lower risk of mis­car­riage if they wanted to know for cer­tain whether their child would be born with a se­ri­ous chro­mo­so­mal con­di­tion.

How­ever, the more I con­sid­ered the im­pli­ca­tions of this test, the more I re­alised that, with nine out of 10 peo­ple ter­mi­nat­ing a baby with Down’s Syn­drome, this was not nec­es­sar­ily screen­ing for, but screen­ing out.

The NIPT is based on a ma­ter­nal blood test. It analy­ses ge­netic frag­ments of the foe­tus present in ma­ter­nal blood dur­ing preg­nancy and it can be car­ried out from 10 weeks of preg­nancy.

At present, the NIPT is not avail­able on the NHS in Scot­land but is avail­able pri­vately. How­ever, it is al­ready pos­si­ble to read state­ments such as: “It is now pos­si­ble to use NIPT to de­tect Down Syn­drome” and that “NIPT de­tects more than 98 out of 100 ba­bies with Down syn­drome’ ” (NHS Rapid Project 2016).

I know that the ma­jor­ity in Scot­land be­lieves in choice, that ev­ery par­ent has a right to choose whether they con­tinue a preg­nancy be­fore 24 weeks but I am not sure that peo­ple are aware they can choose to ter­mi­nate up un­til birth if there is a sub­stan­tial risk that the child would suf­fer from se­ri­ous phys­i­cal or men­tal ab­nor­mal­i­ties.

A child with a ge­netic dis­or­der such as Down’s Syn­drome could be ter­mi­nated right up un­til birth.

The most im­por­tant thing to con­sider here is the no­tion of ‘choice’, and I ques­tion what those choices are based on, with so much nega­tive in­for­ma­tion com­ing our way. When Trudy’s di­ag­no­sis was con­firmed, we were given a man­ual of all the as­so­ci­ated health risks, of which there are many.

I never re­ceived this for our son who does not have a ge­netic dis­or­der but is at risk of dis­ease, im­pair­ment or men­tal health con­di­tions just be­cause these are the risks we all live with.

I think that if I had been given such a man­ual with an an­te­na­tal di­ag­no­sis of Down’s Syn­drome, I would have been very fear­ful of the fu­ture. It seems that too much in­for­ma­tion can some­times be a bad thing and that we need to be very care­ful about how this in­for­ma­tion is be­ing pre­sented.

I am glad that science is ad­vanc­ing and, with­out this progress, Trudy would not have sur­vived the first week. There is very lit­tle that can make you ap­pre­ci­ate life, re­gard­less of how it man­i­fests it­self, than the prospect of los­ing it. But science seems to be­lieve that they are al­le­vi­at­ing the ‘bur­den of dis­abil­ity’, that they are mak­ing hu­mankind bet­ter by giv­ing us the op­tion to erad­i­cate the ab­nor­mal­i­ties. Peo­ple can­not be cured of ge­netic dis­or­ders, so why not screen them out?

At the risk of ex­trap­o­lat­ing, we could be erad­i­cat­ing any con­di­tion that we can now pre­na­tally screen for, such as leukaemia which is a form of blood cancer. This may not be the ex­plicit ob­jec­tive of this project but I can­not help but won­der whether the im­pli­ca­tions have been prop­erly con­sid­ered.

Who is mak­ing the de­ci­sions about screen­ing for Down’s Syn­drome? Are they in a po­si­tion to judge the qual­ity of life for a per­son or a fam­ily of a per­son with a ge­netic dis­or­der? The ev­i­dence, qual­i­ta­tive and anec­do­tal, seems to sug­gest that fam­i­lies live happy and ful­fill­ing lives. We cer­tainly do.

Trudy has an ex­tra 21st chro­mo­some in ev­ery cell, but that is all we know. Like so many peo­ple with dis­abil­i­ties, she can­not be re­duced to her con­di­tion or nega­tive as­sump­tions about what she can and can­not do. She likes, she dis­likes, she wants, she re­jects.

We have been told from nu­mer­ous re­ports that she has global de­vel­op­ment de­lay and low mus­cle tone, but you should see her splash­ing in the wa­ter! She gets tired, but she never tires of talk­ing! I fear that the ob­jec­tive of this project is not to bet­ter equip par­ents for the fu­ture but to give them the op­tion of avoid­ing it, and all at the ex­pense of a po­ten­tially won­der­ful and in­spir­ing life.

These lives are one of the threads

“I am glad that science is ad­vanc­ing and, with­out this progress, Trudy would not have sur­vived the first week”

LAU­REN ELIOTT LOCK­HART

of hu­man di­ver­sity and are pre­cious, re­gard­less of how they process the world.

More needs to be done about the im­pact of this test on fam­i­lies liv­ing with Down’s Syn­drome and other ge­netic dis­or­ders, and of the fu­ture

of this small pop­u­la­tion who bring so much joy to peo­ple’s lives. Mrs Lau­ren Eliott Lock­hart is a lan­guages teacher work­ing with chil­dren with dis­abil­i­ties and a guest writer for the Scot­tish Coun­cil on Hu­man Bioethics.

Trudy Eliott Lock­hart was born with Down’s Syn­drome but likes to talk, likes to make a splash in wa­ter and gives her fam­ily joy

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