Growing up Ben suffered from regular bouts of nausea. He could be sick once or twice and then be fine for the rest of the day.  He also had exercise-induced asthma and suffered from a bad cough every summer. He was a keen sportsman and excelled in all sports particularly football which was his passion.  He trained or played three to four times a week, for his school and club and he captained both teams. 

When Ben was 13, we took him to our local hospital in Essex for a consultation as he had been suffering from persistent nausea and sickness for a long while.  The paediatrician examined him and heard a distinctive heart murmur and he was referred to the Royal Brompton to be seen quickly. 

Ben's Diagnosis

At his first appointment, he was given an echo and ECG. I can recall being fixated with the monitor and all the colours and not knowing if what I could see was good or bad. Afterwards, we waited to see the consultant for the diagnosis, she came and introduced herself and said she would see us in a minute and returned with two other ladies.  At this point, my heart sank and I looked across at Ben who was oblivious and playing on his phone.  We were called into the room and I sensed things were bad. 

I tried to remain positive for Ben as I listened to what I was being told and probably managed to digest about 20% of it.  I heard ‘worse than anticipated, needed surgery as soon as possible, no lifting, congenital, stenosis, dilated, bicuspid and coarctation.

It turned out Ben has been born with a narrowing of the descending aorta, a bicuspid (two leaf) aortic valve.  His left ventricle had been pumping and the valve was not closing properly allowing blood to flow back through.  Also, it was pumping into his aorta which was 2mm instead of 2cm and the blood could not get through the narrowing and was flowing back.  His left ventricle was struggling, his lower body was not receiving proper blood flow his ascending aorta had dilated from 2cm to 6cm+.  Yet he had managed to play football at a high standard for 90 minutes the previous week and we had no knowledge there was a problem.  We later found he did not have asthma and the cough was related to his heart problems.   
An MRI had been arranged for the next morning and we were offered accommodation overnight, but Ben said he wanted to go home and return in the morning.  We went to another room with one of the ladies who were introduced to us as our C.L.N.  She gave me some leaflets to take home and read and explained what we could expect over the next few weeks. 
Ben had the MRI and returned the next week for a CT scan, a week later he met the surgeon Mr Shaw and we opted for a mechanic aortic valve, it required lifelong warfarin treatment but the longevity appealed to us and hopefully only one surgery.  The day we met the surgeon we were shown the ward where Ben and I would stay and the PICU where he would recover initially.  Ben was shown pictures of what he could expect from the surgery, the dressing, the drains and the scars.  At the time I did not appreciate this attention to detail, but later when I reflected it was preparing us well for the impending surgery.

In Royal Brompton's Cath Labs

Ben’s first surgery at the Brompton was to have a balloon stent into his narrowed aorta through his groin, and vascular surgery in his neck to create a bypass for the flow of his arteries.  The artery that supplied his right arm had grown from the left side of his aorta and wrapped its way back and the new stent may have blocked the flow. 
He was in PICU for two days and on Rose ward for a further nine.  His first surgery was very successful, and we were allowed home for Ben to recover and await the call for the next surgery.  The two times Ben did not want to be in hospital were for his birthday which was 10 days before his first surgery and Christmas which was in two weeks. 
Ben continued to recover at home, and we planned for Christmas the best we could.  Grateful he had had one surgery but worried about when and how the next would be.  By the 14th December, I had not heard from the hospital and was starting to be hopeful we could put the surgery out of our minds and try and concentrate on a family Christmas with Ben, his two older brothers and our close family.   

On the 15th I came home from work in the evening and there was a message to say Ben’s surgery had been scheduled for Tuesday 20th December.  I was devastated. How was I going to break the news to Ben his Christmas had gone?  Obviously, I knew that this surgery must be very important for him to be scheduled four days before Christmas and I told myself this was just one Christmas and it will allow him to have many more to enjoy.   

The best Christmas present, getting my son back

Ben and I arrived at Royal Brompton at about 4 pm on 19th December it was the longest train ride ever, but I am proud to say Ben was so good, he did not moan or complain.  Our family celebrated Christmas the previous day and Ben was wearing a shiny pair of trainers and glued to a new iPad. When your child is that poorly you buy them whatever they ask for.   
The surgery process started. We were reassured by all the information we had been given and the familiarity of the staff, but understandably still nervous. Ben had McDonald’s for dinner that night and bravely went off to surgery first thing the next morning.  The waiting is awful, it felt like time passed so slowly, but at about 3 pm that afternoon I got the call that I had been hoping for.   

I remember sitting in the parents waiting room and listening to carol singers entertaining patients in the High Dependency Unit.  My son smashed his surgery and I was so proud of him.  The surgeon told me his dilated aorta was one of the largest he had ever seen; it was just waiting to burst.   

Two more days in PICU and another nine on Rose ward.  Christmas came and went; Ben was not very well on Christmas Day and slept most of it.  He had lots of presents including some delivered by the hospital which he was well enough to open by bedtime.   

Ben was getting used to the warfarin and slowly, his strength came back.  Every day he had more drains and tubes removed until 30th December we were allowed home and this time we did not have to return.

Our family are eternally grateful to the Royal Brompton Hospital and all the staff.  The Consultants, nurses, play team and theatre staff. Within six weeks of our first appointment, Ben had received three surgeries which saved his life and he continues to receive lifelong care there. 

Ben is currently studying at 6th form, learning to drive and looking forward to celebrating his 18th birthday however we can in November. 

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