Health Minister Jim Wells: Wife Grace is back from the brink
Exclusive interview: 'We were told if Grace's level fell below 87 she could die... it dropped below it a few times. That was worst night of my life'
A very relieved Health Minister Jim Wells has revealed that his seriously ill wife Grace is finally on the road to recovery after being diagnosed and treated for an extremely rare heart condition.
The DUP MLA and his family, including his two daughters and son, have spent an anxious 11 weeks keeping a vigil by Grace's hospital bed as doctors battled to discover why she was not recovering as expected from two strokes.
Grace, who celebrated her 57th birthday in hospital last Sunday with a cake and surrounded by her family, has been diagnosed with Platypnea Orthodoexia Syndrome, a condition so rare there are only 50 cases worldwide each year.
The condition means that Grace had a hole in her heart which had gone undetected and which was affecting her ability to breathe.
Her husband revealed for the first time that her oxygen levels were so low at one stage that doctors feared she wouldn't make it through the night.
Grace underwent surgery to repair the hole in her heart in the cardiac unit of the Royal Victoria Hospital last week.
The operation has been such a success that she now no longer needs breathing support and it is hoped today she will also be able to begin to eat on her own again as the feeding tube is removed.
Speaking last night about her ordeal and that of his entire family circle, Mr Wells couldn't hide his joy and relief that his wife has finally turned a crucial corner in her fight back to health.
"At one stage Grace had 12 sets of tubes in and since the operation they have gradually gone and she is now breathing on her own for the first time in 11 weeks," he said. "We are hoping that the feeding tube will now come out of her nose. Grace hates it and she loves a cup of tea so hopefully she will be able to have one tomorrow.
"It will be the first time with no tubes at all and she is really looking forward to that."
Grace now faces a long period of physiotherapy and rehabilitation from the effects of the two strokes she suffered in January which have left her with no feeling on her left side, as well as affecting her speech.
So little is known about her heart condition that doctors cannot say for sure that it was responsible for the strokes but they strongly believe that it was.
Mr Wells said: "The condition is so rare that one of the two consultants treating Grace had never come across it before and the other one - even with 15 years' experience in cardiac care here and quite a long time in London before that - had only seen two cases of it.
"Grace's condition had baffled the surgeons for so long that when they did find out what she had it was full steam ahead to treat it.
"The hole in her heart was causing uneven blood flow and uneven oxygen into her lungs and during surgery they successfully filled it.
"Amazingly they went in through her neck. It is really spooky but they were able to carry out the whole surgery on my wife's heart through an artery in her neck. They didn't have to cut her open at all.
"They also went in through her leg and a week later her neck has almost healed and she has just a bruise there and on her leg."
In awe of the skills of the surgeons who operated on his wife, Mr Wells paid tribute to them and all the staff in both Craigavon Area Hospital and the Royal Victoria where his wife has been cared for during the past three months.
He added: "It was a Dr Owens and a Dr Spence who carried out the surgery and these guys are like rocket scientists, they are so good at their jobs and it's great to have people like that in the health service who are the top surgeons in their field."
Grace had first been admitted to hospital with a stroke in January. She appeared to be recovering well when she suffered another one two weeks later. Mr Wells (57) had refused to leave his wife's side for the first six nights in the Royal Victoria Hospital and he has spent many nights there since as he and his family worked out a rota to ensure Grace always had someone with her.
After suffering a second stroke, Grace continued to struggle to breathe. Mr Wells revealed how at one stage medical staff feared the worst and the family were called to sit with her on what was feared could have been her last night.
He recalled: "One night about seven weeks ago, we were called in and told this could be it. The whole family was there round her bed and we were told she might not get through the night.
"That was the worst, it was just dreadful. We were just sitting through the night watching a screen. We were told if it dropped to a certain level which was 87 - a number forever emblazoned in my mind now - that she could die.
"It dropped below it a couple of times and came back up. We were watching her life on a screen. When she woke up the next morning to see her entire family round her bed she must have been very worried.
"That knocked us all and was the lowest part of our lives. It was a grim night and one we will never forget."
Spending so much time in the hospital over the past weeks has, the Health Minister says, given him a new appreciation of the quality of our health system.
He said that while, before his wife's illness, he considered it to be "reasonably good", now he was impressed by the standard of staff, their dedication and the quality of care they provide.
He insisted his wife did not get any special attention because her husband happened to be the politician in charge of our health service and that everyone in the ward received the same level of care.
And there were some lighter moments too during the long nights that he kept vigil by Grace's beside.
"There was one man who had no idea who I was and he started to give off, saying he was going to write to the Health Minister to complain. I said I would do it for him and he asked did I know the Health Minister and I said 'I know about him, he is a bit of a dragon but I can approach him for you'. There were three nurses standing behind him laughing.
"Another night a woman was visiting a man in the next bed to Grace and she was giving off about what she would say to the Health Minister if she got the chance. The man in the bed was aware I was there and you could see him desperately trying to stop her speaking.
"I was bowled over by the quality of care I witnessed in our health service. Especially during the nights I had the opportunity to speak to everyone from porters to neurosurgeons and I found it all incredibly useful.
"I have to say that all the staff were amazing. I met a lot of nurses from the Philippines, India, Poland, Lithuania and Nigeria who were always willing to work, especially at night when it is difficult to get staff. I found them very dedicated and their English was even better than mine.
"My view of them has risen even higher than it was as a result of seeing how caring and good they are at their jobs.
"We really do need to appreciate these people. It must be very difficult for them to leave family and travel to a very different environment in Northern Ireland to work.
"The local nurses too are fantastic and, yes, they do find it difficult to get night staff sometimes and can be short a nurse or two and you never see them sitting down. They can't get enough staff to fill the rotas and that's where problems arise. It has given me a tremendous insight into what life is like in our hospitals day and night."
Grace now faces a long road ahead to recovery, with intensive speech and language therapy and physiotherapy.
Her speech has been improving and just this week she had the first movement in her left arm, which was a great encouragement her husband said.
It is the loss of movement in her arm which has hit Grace hardest as she loves handicrafts and takes evening classes in knitting, crocheting and sewing. Mr Wells said in the 32 years they have been married, he had never seen her go an hour without knitting and her time in hospital had been the longest that she has been unable to enjoy her hobby.
He said: "It's very frustrating for her. If she had use of both her hands she would be sitting up in hospital knitting a jumper or bobble hat or scarf. She could sit and knit for Ulster, knitting is the great love of her life. She has a long road ahead of her yet and I know if she could just get the movement back in her hand, it would make so much difference to the quality of her life."
While the couples' two daughters, who are 29 and 26, and their son, who is 24, prefer to remain away from the spotlight, Mr Wells revealed it had been a difficult time for them, especially one of his girls.
He said: "Two of them are very cool and collected and have coped well but the third is like her father, quite intense at times and highly strung, and it has been a bit tougher on her seeing her mum so ill.
"In the last few days Grace has genuinely improved so much that is easier on us all, to look at her she has never looked better.
"All three of our children's employers have been brilliant, they all knew Grace and that probably helped and all three are now back at work."
Mr Wells paid tribute to everyone who has supported him and his family during the past few weeks.
He added: "People from church, the local community, family, friends and my party colleagues have all been a tremendous support.
"I go to the hospital at night and then sit and text everyone to let them know how Grace is doing and I text about 220 people. The amazing thing is that it could be three in the morning and I will get texts back and that sort of support is wonderful. It makes it so much easier."