NICHS | Tom and Anne’s Story
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Tom and Anne’s Story

26 Feb


When newlyweds Tom and Anne Johnston decided to start a family in the 1950s, they could not have foreseen the tragedies that lay ahead.

Their first baby died before birth from a brain condition. Their second, Kay, had the congenital heart complaint Fallot’s Tetralogy. And their fourth, Tommy, who was born with a hole in his heart, died at just four months.

This was in the days before antenatal scans and complex heart surgery were commonplace. In fact, Kay’s heart condition wasn’t picked up until she was three years old and the family’s doctor, purely by chance, noticed that her skin was blue when she did anything strenuous, like running.

There followed a long series of consultations with heart specialists in Belfast and London. Tetralogy of Fallot is a condition in which at least four heart defects are present at the same time. Even when surgically repaired, further problems can occur later in life.

At age 11,
having sat her second 11–plus test on the previous day, Kay was admitted to the Royal Victoria Hospital for ‘corrective’ open heart surgery by Mr Patrick Molloy. Whilst it was not possible to correct her condition completely, it was thanks to Mr Molloy’s skill that Kay was able to continue her education through grammar school and, with the later help of a pacemaker, on to university and a working life which took her to Liverpool, Germany,
London and Austria.

However, as she grew into her middle thirties and, in spite of an up–dated pacemaker, Kay’s health deteriorated. “It was at this point,” says Tom, “that she had to consider seriously the possibility of a heart transplant.”

Anne and Kay travelled to Newcastle upon Tyne so that she could be physically and mentally assessed to see if she would be a suitable candidate for a new heart. She was cleared to go on the waiting list, but still couldn’t decide whether she wanted to undergo the surgery. At this point she was advised to return home and live with her parents. After six months, as her health became worse, she took the decision to ask for her name to be placed on the transplant waiting list.

“At this stage,” says Anne, “her heart was failing.”

Even so, it was another seven months before a donor heart became available. The surgery, in Newcastle–upon–Tyne, took
11 hours. Tom stared at the door of the operating theatre all that time while Anne waited at home for news. The operation was complicated by the fact that Kay’s heart had grown extra blood vessels to compensate for its own shortcomings.

She survived and has continued to lead a full and active life.

Tom and Anne who are now in their 70’s and have three other children unaffected by congenital heart conditions, went for genetic counselling but were told the conditions Kay and Tommy were born with were a tragic coincidence. They have nothing but praise for the Health Service and those who worked with them down the years, and they realise that their experience was influenced by the fact that medicine was less advanced when they had their children.

But even with the advances in treatment and surgery, they don’t want to see anyone else having to cope with a gravely ill baby. That’s why they are supporting our Baby Hearts research project.

Please support the Baby Hearts Appeal with a donation today. Together, we can give babies the healthy hearts they deserve – and save many, many lives.

Thank you.

If you would like to support us, you can set up a small, regular monthly gift or give us a donation today.

To help our Babies’ Hearts Appeal with a regular monthly gift, please click here to set up a direct debit.

If you would like to make a donation today, please click on the yellow Donate button.

£25 could help pay towards the recruitment of a family for the research study.

£50 could help cover the costs of the cardiac nurses’ support for the study for one week.

£250 could help cover the costs of the cardiac nurses’ support for the study for one month.

£1000 could help pay for the Baby Heart’s Study for one week.

£5,000 could help pay for the Baby Heart’s Study for one month.


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