Our Story

Before we begin our story, Ann has been in ICU for 528 days and counting.

Ann was incredibly fit and active, she competed four times in the Commonwealth Games representing Northern Ireland in badminton just as a background to the wonderful woman she is. We travelled a lot, and we walked everywhere in the places that we went.

Ann has a very rare condition which is called a spinal AVM. This was first diagnosed in 2000. This bled in 2003 resulting in 7 months of rehabilitation in hospital. The AVM is very high up on the cervical spine. Ann recovered to a reasonable level of mobility. We had planned to get married, and had to postpone, but we eventually got married in Florida in March 2004 after Ann recovered as much as possible. We enjoyed life together, infact we did everything together.

2022 was a big year for Ann, she had a lot planned for her 60th birthday celebrations, we had several trips planned, including a long ambition of Ann’s to go meet Red Pandas in Longleat Safari Park England. We had to cancel everything!

Sadly this AVM raised its ugly head again in April 2022 with two aneurysms close to the AVM, this caused a bleed to her brain, thankfully she recovered well after a few weeks in hospital.

Her primary neuroradiologist for the last 20 years diagnosed the aneurysm in April 2022, and the decision was that something would have to be done to try to eliminate a further bleed, which he said could have catastrophic consequences. He was bringing in specialist help from an experienced colleague in Israel. (Yes, Israel, this tells you just how rare we are talking). We knew there were risks, but he was confident in what he needed to do to keep the procedure as safe as possible and to embolise only the aneurysm which he believed was to blame. But there was still an unknown risk of complexities during the procedure.

Procedure was due to be performed in May 2022, but due to complications in other procedures they were doing, it was cancelled at two days notice. The procedure was then rescheduled for June 22nd 2022.

Unfortunately we both caught COVID on June 15th 2022, Ann had no symptoms whatsoever. It was decided by the neuroradiologist that the procedure would have to happen despite COVID, and that they would just take precautions.

She was admitted on June 21st 2022, but on the morning of June 22nd 2022 at around 07:40, the anaesthetists decided that due to COVID, she should not be given anaesthetic. They would not change their decision despite the neuroradiologist appeal, and Ann was discharged on June 22nd 2022 late afternoon.

There was another small bleed on June 24th 2022, Ann is already COVID negative as am I. She is admitted back to hospital again. Her primary neuroradiologist is now on holiday until July 20th 2022.

Unfortunately we had another much bigger bleed on June 27th 2022, Ann is admitted to ICU and put into a medically induced coma, and taken to theatre to have a drain inserted into her brain to relieve the pressure on her brain.

We now have two other neuroradiologists involved, one is known to us from the very first diagnosis of the AVM, but he openly admits to me that he is very reluctant to do anything unless he has no choice, he would prefer to wait for the primary neuroradiologist to return. He tells me he will do an angiogram to see what is going on.

He does the angiogram on the morning of June 28th 2022 and calls me during the procedure to explain that he knows the source of the bleed and this was highly likely to bleed again, which would likely result in the death of my beautiful wife. He was going back to perform an embolisation procedure as soon as he was done with the call to me.

He explained the risks of the procedure very clearly. They were paralysis, being unable to breath without a ventilator, and death should it bleed and they cannot get the bleeding stopped.

They spent 4.5 hours trying to get at the aneurysm and finally gave in, as they needed smaller coils and catheters because of how small the blood vessels were. They would retry on at 9am on July 1st 2022, allowing the blood vessels to recover for a few days.

ICU told me that I would be welcome to come and spend time with Ann on the morning of July 1st 2022. I wonder now if the two neuroradiologists knew something.

I arrived in ICU at 05:30am and spent several hours with Ann. We communicated as best we could, Ann could not speak due to the ventilator tube, but held my hand, squeezed it and blinked to acknowledge what I was saying.

They increased sedation about 08:30 and I went with Ann to the interventional suite where the procedure would happen. I was given the consent forms and explained that this was high risk, the consequences explained once again.

Between the bleed and more probably the medical procedure by the two neuroradiologists, Ann is now paralysed from below her neck, and requires a ventilator to breath.

They embolised the entire blood vessel where the aneurysm was located causing spinal cord damage in the process.

Ann remains in the Royal Victoria Hospital in Belfast, still in ICU, but at least we can actually talk with each other.

There are issues within the NHS as to where to move her to next, and in which hospital.

We need extensive work to our home in order for Ann to be able to return here again. She will require nurses and carers at home 24 hours. The NHS will source dedicated nursing staff for home and provide all medical equipment necessary.

We have had the NHS occupational therapy people visit home to assess whether its suitable for Ann in current form or not. They have quite literally told me that we should consider moving to a bigger house, or bungalow.

We have also been told that we will need to undertake all work at our own expense, as we are not eligible for any financial help whatsoever due to me working full time, and Ann having a private pension.

The alternative is Ann going to a nursing home, or some other kind of assisted living. This must be avoided completely, as I’m sure you will fully understand.

I have engaged with an architect to begin the process. He has designed the extension and obtained all planning/building permission really quickly for us.

Getting a mortgage at my age will almost certainly be a problem. It makes you feel angry that you’ve done your best to plan for the future and then when you desperately need some financial help, the government authorities turn their back on you.

To say we are distraught is an understatement. Both our lives have been turned completely upside down. All we want to do now is to just get Ann home. Our lives are never going to be anything like they were.

Currently I spend as much time in ICU with Ann as I can, but all I want is to get Ann home so things can be more normal, or as normal as they can be but at least out of the hospital environment.

If I can get my wife home then it will ease things considerably.

Usually we have to say goodbye about 7pm so I can go home to attend to things and eat, then we don’t see each other until the following day, all while fitting in my work schedule.

With Ann at home, we wouldn’t need to have those goodbye moments anymore, and we would be able to spend so much more time together in the comfort of home.

I should also add, the ICU nurses, consultants, physios etc in the Royal Victoria Hospital have been absolutely fantastic, as have the ICU administration staff. It was actually the nurses in ICU that said we should try Just-Giving for a bit of help with funding.

I really hope you would be able to help.

I will keep key updates on this page so our gratitude to your help will be shown throughout this journey. Please share this page with your friends and loved ones and help us to get Ann back home again.

Thank you ever so much in advance.

Shaun and Ann

Happy times