Down syndrome: ‘It teaches you to be a better person'
The couple, who live in Lissycasey, outside Ennis, Co
Clare
, were in their mid-30s when they married in 2019. After attending a private clinic for
in vitro fertilisation
(IVF) in 2022, they achieved
pregnancy
in the first round.
'It was kind of astonishing,' says Bernie O'Kennedy. 'I'd never had a positive pregnancy test. We couldn't really believe our luck after so much upset over the years.'
Their daughter Pippa, 'a long-awaited miracle', arrived in July 2023. At that stage they already knew she was coming with one extra copy of chromosome 21 in her body cells, a
condition
known as Down syndrome.
READ MORE
Their doctor had noted a thickening of the nuchal fold at the back of the foetus's neck during a scan at 11 weeks in December 2022 and referred them to a foetal specialist for further investigation. A non-invasive Harmony test indicated a strong likelihood of their baby having Down syndrome. They had this confirmed through amniocentesis testing. As a first-time mother, O'Kennedy recalls, she wanted to know for sure what she was dealing with. She said: 'Then you are given options – 'if you don't want to proceed with this pregnancy, etc'. But that wasn't the case for my husband and I.'
She recalls how the then master of the Rotunda hospital in Dublin, Prof Fergal Malone, was quoted that same December, during an
interview with this newspaper
, as saying that about 95 per cent of parents whose babies are diagnosed with Down syndrome at the hospital choose to terminate the pregnancy.
As far as she and Crohan were concerned, while the diagnosis was undoubtedly life-changing, it was not life-threatening. But it was still a shock. 'You go through 'what did I do wrong?', particularly when you go down to the IVF route. You're so clean in your diet, you're so healthy and I guess the worst part was I had just lost my mum earlier that year. It was like layers of grief [kept] going.'
When 'miracle baby' Pippa was born in July 2023 her parents already knew she was coming with one extra copy of chromosome 21 in her body cells, a condition known as Down syndrome
Once she was back in the public maternity system and the couple had got their heads around the diagnosis and possible health complications, they believed they would just have to cope with whatever transpired. They were assigned a social worker and the pregnancy was closely monitored at the foetal unit in University Hospital Galway.
'The staff are just incredible,' she said. However, in other respects, 'it's a grim setting because everyone's there because there's something wrong with your child, the baby'.
She experienced a mix of emotions throughout; tears some weeks but also delight at seeing the baby growing. She also had the onset of gestational diabetes to cope with. 'I always knew this baby was going to be strong,' she says.
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The baby was due around the first anniversary of her mother's death from lung cancer. She said: 'It was literally like this weird gift of life; that she was going to bring a lot of joy to everybody.'
Her mother, Mary Higgins – 'a phenomenal woman' – not only raised 10 children but was also a respected primary schoolteacher and principal in Drumlish, Co Longford. Bernie grew up in the neighbouring village of Gortletteragh, Co Leitrim, before the family moved to Drumlish. Their father, a farmer, died when Bernie was 18.
'She would always have fought with social justice for the kids that didn't have a lot or weren't deemed the brightest,' says O'Kennedy of her mother. 'She looked after the underdog.'
Pippa arrived via a vacuum-assisted delivery on Friday, July 14th, 2023. 'I was hell-bent trying to attempt to breastfeed, even though we're told that Down syndrome babies probably don't breastfeed. But she did, she latched on straight away.'
'The kids didn't see any difference to Pippa. They just saw a little baby who's thriving and it was the most gorgeous experience for me and for her,' says Bernie O'Kennedy. Photograph: Eamon Ward
Although Pippa had been assessed with a healthy
Apgar score
on delivery, that evening she was transferred to a neonatal intensive care unit (NICU) after becoming very sleepy. Express milk was fed to her via a nasal gastric tube and within two weeks she was home with her parents. After four months of combination feeding, although predominantly breastfeeding, 'we really kind of mastered it', says O'Kennedy, clearly glad she had persevered with breastfeeding against the odds.
That September she enrolled in the Barnardos-run Roots of Empathy. This involves a parent bringing their baby into a primary school every three weeks over the school year, where the children can observe the baby's development and are invited to talk about the baby's feelings. The initiative has been shown to reduce levels of aggression among children.
'The kids didn't see any difference to her. They just saw a little baby who's thriving and it was the most gorgeous experience for me and for her,' says O'Kennedy.
From six months, Pippa has been able to have speech and language therapy, thanks to the support of the Clare branch of
Down Syndrome Ireland
(DSI). O'Kennedy had contacted them about halfway through the pregnancy. The 'gorgeous, heart-warming' response was just the reassurance they needed.
Since Pippa was born, the couple have been involved in fundraising for DSI Clare, run by fellow parents of children with Down syndrome.
Crohan O'Kennedy ran the Dublin city marathon last year and will be out shaking buckets at the annual Tour de Munster (tourdemunster.com). Now in its 25th year, the four-day charity cycle starts on August 7th and takes a 600km route through the province. Funds will be raised and awareness spread for DSI's branches in Munster.
Pippa, having just celebrated her second birthday, is now a 'powerhouse' of a toddler, says her mother. 'She's so determined, she's already walking now. She wants to be in everything.'
Crohan and Bernie O'Kennedy with their daughter Pippa, who is due to become a big sister soon. Photograph: Eamon Ward
When Pippa's diagnosis was confirmed, Bernie O'Kennedy recalls her husband saying he always wanted to go to the Special Olympics. Now they are wondering what event their daughter might participate in.
'She's strong, she's flexible,' says Bernie O'Kennedy, musing on the possibility of gymnastics being Pippa's thing.
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'I'm going to be with the HR gang, working with the loveliest boss ever'
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What's more, the little girl is due to become a big sister in just under three months' time. To the O'Kennedys' great surprise, this baby was conceived naturally and they now know it's a boy.
'I had a miscarriage before Christmas with an embryo, so then this was a complete shock again. I think I'm still in shock. A good shock.'
A Harmony test this time indicated low probability of a chromosomal abnormality.
To other parents who may receive a diagnosis similar to Pippa's, Bernie O'Kennedy says: 'It may not be what you want, but actually it's not the worst diagnosis you could ever get. If anything, it teaches you to be a better person, to slow down, to be more kind. You have to have a good talk with yourself. A child is going to teach you everything, particularly a child with additional needs.'
Frustration over speech and language support
Parents of children with Down syndrome are frustrated by a lack of access to speech and language therapy through the HSE. When they do get assistance, it is 'completely contraindicated' to their children's needs, according to DSI.
Children with Down syndrome need weekly, sustained, intensive therapy, which is not provided for under the current model in the Children's Disability Network Team (CDNT), according to DSI's national speech and language therapy co-ordinator, Olive Buckeridge. The CDNT generally provides speech and language therapy (SLT) in occasional, six-week blocks.
'You're not guaranteed X number of blocks per year; you are lucky if you get a block per annum,' she says. 'The key to all learning with people with Down syndrome is repetition, because they have very poor working memories. They need to be reminded, so we need weekly intervention.'
Buckeridge devised and trialled a new programme, called Keep Communicating, specifically designed for children with Down syndrome aged six months to 12 years. 'I found that it was very effective, that anybody could utilise this programme.'
[
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]
The next step was to train SLT assistants to support the DSI's own small team of therapists, so that more children could be helped on a consistent basis.
At the outset, the organisation could only provide SLT in five counties and this is now reaching 16 counties. It is estimated that there are about 2,000 children aged 0-12 living in the Republic with Down syndrome, but not all would be members of DSI.
Under the DSI initiative, the therapists assess each child and design a tailored communication plan, which the assistants then deliver every week, Buckeridge explains. This can be done at home, in early years settings or in primary schools. Delivering it in school takes the pressure off parents having to take children out for appointments.
Rethink Ireland (previously known as the Social Innovation Fund Ireland) provided funding for a pilot of the scheme over the past year in seven counties, in the northwest and the southwest. 'The outcomes have been really positive,' says Buckeridge. 'There has been an increase in speech clarity, the use of sign language, and the children are more confident in the use of communication.'
After the initial training of two SLT assistants, there are now seven and various branches fundraise to support the programme. 'In the last six months, SLTs and SLT assistants have delivered over 8,000 interventions, which is fantastic. There's no way any CDNT could compete with us nationally.'
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The programme helps alleviate the pressure on SLTs, so that they can use time saved on more complex cases. But sustaining and expanding the programme would depend on Government funding, for which the DSI is now publicly appealing, having made representations to relevant ministers.
The CDNTs could outsource to the DSI, she adds. 'They could give us the funding and we would look after the children [with Down syndrome] on their caseload.'
Ultimately, the DSI would also like to extend the programme across the lifespan. 'Adults need as much therapy as children. They're the forgotten cohort.'
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