I found out I had a potentially fatal medical condition in my 30s

A man who was adopted at birth is calling for adoptees to have better access to their medical history after he only learned that he had a potentially life-threatening condition once he met his biological father in his 30s.

Chris Tennyson is 38 and lives in Belfast.

He met his birth father for the first time in 2019.

It was then that he became aware that he needed to be tested for malignant hyperthermia. He subsequently tested positive for the disease.

Malignant hyperthermia – also called malignant hyperpyrexia – is a rare condition in which people who are affected can experience a rapid and dangerous rise in body temperature.

“It’s a very severe reaction to certain anaesthetic gases that would be used for routine operations or certain pain medications,” Chris told BBC News NI.

“Had that had been administered to me there is a chance I could have had a fatal reaction and died.”

Chris met his birth mother in 2011 and said social workers told him that he was not allowed to ask her questions about his birth father.

“With the passage of time, information did come my way which informed me of who my birth father was,” he said.

“This information about the condition could have been made available to me from the year 2000 when it became discovered in my birth father’s family.

“I think that when social workers are facilitating contact between adopted people and birth families there should be an open conversation with all parties about the possibility of medically-inherited conditions and the potentially fatal impact of that.”

Chris believes that it is a human rights issue.

“For me, there is something about the value of myself as a person,” he said.

“I should have been entitled to that information about myself and there needs to be change to ensure that other adoptees have that as well.

“No barriers should be put in an adoptee’s way when they are asking questions about their identity because it could be life saving to have that information.”

How many adoptees are there in Northern Ireland?

There is no central record of the number of adoptees living in Northern Ireland.

However, figures from the Adopted From Care in Northern Ireland report show that during the year ending 31 March 2024, 97 children were adopted from care in Northern Ireland.

Charlotte Jay is an adoptee community development officer with Adoption UK and says Chris’s experience is very common.

“Adoptees face many inequalities in their lives and I think access to healthcare is one of those,” she said.

“I think not knowing your medical history could literally mean life or death in some circumstances.

“There is no legislation in any nation of the UK that guarantees the right for adoptees to access historical personal records, including medical records, and that needs to change.

“I think it adds to the trauma.

“I think having that lack of medical information can be a factor for your whole life and it’s not just for adoptees ourselves but it’s also for adoptees’ children as well.”

SDLP MLA Matthew O’Toole has brought up the issue at Stormont.

“Chris and others have raised this anomaly where children of adopted parents aren’t able to access as full information as they should be in relation to health,” he said.

“I think it’s really important.

“They need to be able to access the most complete information possible and so we are really keen the Department of Health does all it can to complete that process.”

The Department of Health (DoH) said that an adoption agency is required by law to obtain and keep a record of information about the child’s health.

The agency also has discretion to disclose information to adopted adults seeking access to their information, taking into account the welfare and interests of the adopted person with those of any third parties whose information may be held, the DoH added.

When a child is placed for adoption, they are given a new health and care number.

The DoH said processes are in place to advise relevant healthcare settings of the child’s new name and health and care number, and arrange for the transfer of relevant medical records.

Through the ongoing development and implementation of a digital health and care record, the department is working to ensure that appropriate records of care, both pre and post-adoption, are maintained, while at the same time ensuring that all necessary steps are taken to respect the privacy of the adopted person and their family.

The DoH added that efforts are being made to encourage greater disclosure of medical information known at the time of the adoption.

The Southern Health and Social Care Trust also said it is committed to working with regional colleagues to continue to strengthen and improve adoption practice.