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'Lives could be saved': Woman with MS says adopted people should have access to medical history

“So many lives could be made better, saved, elongated, if doctors knew what they were testing for.”

Sinéad Buckley
Sinéad Buckley
Image: Sinéad Buckley

A WOMAN BORN in a mother and baby home has said it’s vital for adopted people like her to have access to their birth and medical records.

Sinéad Buckley was diagnosed with multiple sclerosis (MS) in 2015 when she was 43.

Now 48, she believes she could have been diagnosed with the condition earlier if she had access to her medical records.

She recently found out that a relative on her mother’s side of the family died from MS in their 40s.

MS is not directly inherited, although research has shown that people who are related to someone with MS are more likely to develop it.

Sinéad says there is “a huge hole in the system” when it comes to adopted people having access to their medical records.

“Imagine everytime you go to a doctor or to hospital and they start asking, ‘Any history of heart disease, cancer, etc?’ And you have to raise your arms up in frustration to say, ‘I don’t know. I’m adopted.’,” she tells us.

As the country comes to terms with the content of the final report of the Commission into Mother and Baby Homes, which was released last month, Sinéad says the lives of people connected to the institutions will be affected for generations to come.

She believes the health of many survivors, and adopted people in general, could be improved if they knew their medical history.

“Tests are so good now and so many lives could be made better, saved, elongated, if [doctors] knew what they were testing for. This is for generations going forward.”

New legislation

Compared to other countries, Ireland has very strict tracing and information legislation.

Under the current law, adopted people are not entitled to their birth certificate or to information about their families of origin. The birth parents’ right to privacy currently gets precedence over the adopted person’s right to information.

The government has promised to introduce long-awaited tracing and information legislation this year.

“There are so many other countries that have released medical notes,” Sinéad says.

“I have a father out there, and he probably doesn’t even know I exist. I don’t know whether he wants to know I exist. I’m not looking to upset him, to get in contact with him, or to upset my birth mother’s family.

“They’re saying ‘we can’t be giving out that information’, we’re not looking for home addresses so we can just show up. As adoptees, we’re just looking for medical history, and maybe just a little background.”

Dr Maeve O’Rourke, a lecturer in human rights at NUI Galway and a co-director of the Clann Project which advocates on behalf of survivors, says the struggle adopted people face to get access to their records “shows that the abuses continue today – denial of access to records is an ongoing abuse”.

The government “needs to keep its promise” on tracing and information legislation, O’Rourke adds.

Loss of sight and balance

Sinéad had various health issues over the years, which she now believes could have been linked to MS. She underwent various tests over the years, but was only diagnosed in 2015.

“I lost the sight in my right eye in 2013, it never came back,” Sinéad says.

MS is an autoimmune condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.

There is currently no cure for MS, but a number of treatments and medications can help control it.

Most experts agree that MS is probably caused by a combination of genetic and environmental factors. This means that it’s partly due to the genes you inherit from your parents and partly due to outside factors that may trigger the condition.

Mary Ryan, a community worker with MS Ireland who provides support for Sinéad, explains that more than one member in a family can have MS “but it’s not a directly inheritable disease”.

There is a “genetic predisposition” in some people who have the condition but something in the person’s environment can trigger it.

‘Your mother doesn’t want anything to do with you’

Since her teenage years Sinéad has had issues with her balance, eyesight and overall health. When she was 16 she was admitted to hospital because her skin was turning blue, bemusing doctors.

“I think I was in there for around two months there were just every single test under the sun, they thought it was leukemia.

“I remember all of these talks going on and my mother being fuming because they were so flummoxed. They were afraid it was a heart defect,” Sinéad recalls.

FIRST YEAR IN SCHOOL (1) Sinéad shortly after she started primary school Source: Sinéad Buckley

She says the doctors contacted the adoption agency Cúnamh, formerly the Catholic Protection & Rescue Society of Ireland (CPRSI), in a bid to get access to their medical records but were unsuccessful.

“They rang Cúnamh and said, ‘We’re not looking for any information but we have a really sick patient here, we need a medical history, because this is serious.’

“They really just couldn’t get any information, they thought maybe there was something wrong with one of the chambers in my heart, they put me on heart meds.

“I’d go back for checkups and they’d say, ‘You seem better but it’s very disturbing to us that we still don’t know what the hell was wrong with you.’”

Sinéad says she tried to get information from Cúnamh a few months beforehand – over 30 years ago now – and was told her mother didn’t want to hear from her.

She says the woman in the office told her it was a closed adoption, adding “your mother doesn’t want to have anything to do with you”.

“And I said, ‘Did you ring her?’ She replied, ‘No, I just know.’”

Cúnamh closed on 20 December 2019 “with considerable regret because proposed legislation, once enacted, will vest all future rights and responsibilities for information and trace service solely in State Agencies”.

Cúnamh’s files were transferred to the Adoption Authority of Ireland in mid-December 2019.

In 2016, Sinéad eventually got some information about her birth mother and early months.

“It was only then, years later, when I kept on hassling them kept that they gave me all the supposed notes of the adoption.”

Sinéad also found out about some of her relatives by sending a DNA sample to an ancestry website.

‘It’s a terrible thing to have to give away your own child’

According to the files from Cúnamh, Sinéad was born in Daisy Hill Hospital in Newry in August 1972.

Her birth mother, Eileen, was from Waterford and living in Dublin but arranged to give birth to her in Newry such was the fear someone who knew her would see her in Dublin.

She was “baptised at (her) birth mother’s request” on 3 September 1972 in the Good Shepherd Convent. The Good Shepherd Sisters ran Marianvale mother and baby home in Newry.

Sinéad lived in this institution until she was fostered and later adopted when she was two and a half years old by a couple in Dublin.

The files state that Eileen’s first contact with Cúnamh was in May 1972.

One document notes:

The agency worker described her as being of “average size, slimly built with a palish freckled complexion, blue eyes and medium length fairish hair”. In terms of personality she presented as being “a talkative, friendly sort of girl with an easy, natural manner”. The agency worker said Eileen was “obviously upset and very worried”.

Speaking about a later appointment, another file states:

At Eileen’s next appointment, the agency worker commented that Eileen seemed “to be in a complete state of indecision and daze concerning her pregnancy”. The agency worker stated that she was very concerned about her baby; Eileen said “it’s a terrible thing to have to give away your own child”. She said she would like to be able to keep her baby but could not see how this could be done. The agency worker noted that Eileen was very emotional.

According to the documents, Eileen visited Sinéad in foster care on 20 October 1972.

“The agency worker reported that Eileen was “very happy with the baby’s progress” and “satisfied” that she had a good foster home but this apparently “brought home to her more than ever now how necessary a proper set of parents are for the baby’s future”.

Eileen signed her initial consent form for adoption on the same day.

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“The agency worker said she was satisfied that she could not rear the child on her own”, but added: “it was a different matter when I presented her with the consent forms. It took her an age to actually sign them”.

83629d11-e039-4a70-80cf-c119f0e43f61 Source: Sinéad Buckley

The agency worker wrote to Eileen on 9 November “to inform her that you had been placed with your adoptive parents”, who “were thrilled with you and took to you immediately”.

The agency worker said your adoptive parents thought you were “really exquisite” and that she could rest assured that you had “a good home”. The agency worker also felt that Eileen would have “approved” of your new parents and would have “liked them very much”.

Eileen signed her final consent form on 30 March 1973 and the Adoption Order was granted on the 15 May 1973.

Eileen gave her daughter the name Jane Frances. Her adopted parents changed this to Sinéad Frances. Sinéad is the Irish version of Jane.

‘Eileen, is that you?’

Sinéad says the recent publication of reports into mother and baby homes in the Republic and Northern Ireland has led to her reflecting on her past once again.

Her adopted parents have both passed away and her birth mother, Eileen, died from cancer last year before the two could meet.

A few years ago Sinéad sent her birth mother a letter, letting her know that she would like to meet. She says she never got a response but had a number of “silent phone calls” she believes may have been Eileen.

“I’d say, ‘Eileen is that you?’, I could hear someone on the line but she’d just hang up.”

Sinéad has been isolating since March 2020 as a precaution due to the Covid-19 pandemic. She is vulnerable because she went through a second round of chemotherapy last July as she relapsed.

Sinéad says isolating is “very lonely” but she is “strong” and has supportive friends.

“I will fight for people’s medical histories. I am so angry. Where are adoptees’ medical records, medical histories?

“How many of us could have been diagnosed with our diseases and illness so much earlier and had a proper chance at life?”

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Órla Ryan

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