We were first told that our baby had a problem with her heart at our 20-week scan. We were led to a side room, to wait for the consultant to come and speak to us. After 45 minutes the consultant came in and said that there appeared to be a hole in the babies' heart and he felt it was in our best interest to have an amniocentesis, as our baby could have Down Syndrome.
Our whole world had collapsed within a 60 minute period; I did not know anyone who had a child with any problems, why was this happening to us? We had waited so long for another baby.
We went ahead with the amnio test and waited 3 weeks for the results; during this time we were told we would have to go for a scan at the foetal medicine unit at the Women's Hospital in Birmingham.
Two weeks later after the next scan we were ushered into another side room to await the results. We knew we were in trouble when 3 people came into the room looking awfully solemn. We were then told our baby had very severe heart problems and would require major open heart surgery in the first few hours of life, if our baby managed to get through the surgery (which was very high risk) she would have to go through more surgery at the ages of 9 months and three years old. We were then told that the baby's heart could not be corrected; only patched up! This meant the baby would have breathing problems, be of blue appearance, due to circulation problems and would eventually require a heart transplant, of course most patients die whilst awaiting a new heart as organs are very hard to get hold of and only last around 10 years!
We were offered 3 options: - to have the baby terminated, go for the surgery and hope for the best, or have the baby & take it home to die. We decided to give our baby the best chance of life and go for the surgery, leaving it in the hands of god.
Our precious daughter ‘Charlie Grace' was born on Saturday, 4th August 2001 at 10.30am by normal delivery; she was a lovely colour, very noisy and had all the appearance of a `healthy` baby. After a quick glimpse Charlie was whisked away to the Special Care Unit and looked after by the paediatricians. Within 2 hours she was taken to the Birmingham Children's Hospital where we were to all start on this new journey that was to map out our future way of life.
The Consultants and Heart Surgeons decided to operate Sunday morning, the day after she was born; she would be less than 22 hours old. We were given 5 minutes to hold Charlie before they had to get her ready for surgery. The operation went well they told us, she was in theatre for 5 hours. Charlie was on a life support machine with huge amounts of tubes going into all different parts of her body. The next 48 hours were to be crucial; 2 days later she started developing complications.
After further examination we were told Charlie had suspected NEC (a stomach infection), a condition babies can get from being on the Heart & Lung Bypass machine. Charlie was seen by a stomach surgeon who told us she may have to go back to theatre for surgery on her tummy, as gangrene can set in and there was a 60% mortality rate. Charlie was watched closely over the next few days and was taken off her milk feeds.
Another problem developed because Charlie was not being fed, her band became to loose around her main artery (this was done during first open-heart surgery). This began to cause too much blood to flood her lungs, so she had to go back to theatre to have the band tightened.
Another 4 hours passed and she came back to ITU to get over this surgery again. Within 2 weeks she was out of ITU on a ward and then allowed home. We had never been allowed to imagine this day; she had been through so much in such a short time.
Two months later Charlie was rushed to A&E looking very poorly. The cardiologist struggled to find what was wrong with her, so he took her to theatre for a Cardiac Catheter (an examination to look in her heart).
They could not find any problems and she came back onto the ward, I knew she was not well, just an instinct, in the morning it was apparent she was ill, she was having fits. After a brain scan and lots of worried doctors running around, we were told Charlie had had a bleed to the brain. We were absolutely devastated. She was put on anti-convulsive medication and seen by the neurologist.
Again the future seemed very grey as we had been told that they had no idea how this would affect Charlie just like her heart problems. Strangely things went on quite well at home for a few months when her consultant told us he wanted to do a cardiac catheter to see when she needed her next stage. After this she was booked to come in for more open-heart surgery at the age of 11 months.
We took her into the hospital for this surgery with heavy hearts as she had been so poorly and so unlucky with her recovery before we were so frightened, she seemed so well. Charlie had her 2nd stage on the 11th July 2002 and was in theatre for 8 hours. She had problems on the heart & lung bypass machine and at one stage they could not get her off. After a week with a couple of hiccups she was on the ward on the road to recovery.
After this op we noticed such a difference in Charlie's recovery and development. It was apparent how little she had been eating, growing, prior to her op.
In June 2003 Charlie had another catheter to coil off a couple of vessels that had appeared and after this she was very breathless, we then found that she had a pneumathorax, a pocket of air on her lung, so it was back to theatre for a chest drain to be fitted.
A week later she was allowed home. We had a lovely year and took Charlie on her first holiday abroad, which we all thoroughly enjoyed and deserved. The sad thing about these family events, holidays, birthdays, Christmas etc we always wonder if they will be the last one we will share with Charlie.
We attended heart out patients in November 2004 and were told that another cardiac catheter would be done in January 2004. This again was to sit in the air with us all over Christmas. We took her into hospital just after the new year and again took her theatre and said our goodbyes.
The Cardiologist came to see us a few hours after Charlie was back from theatre, they would have to bring her third stage forward as we are not happy with her blood levels they were far too high her haemaglobal level was 20 and her oxygen levels were low 70's high 60's.
Charlie was booked in to have her third operation in May. We decided to go away again, before her next big op; it was starting to become a habit.
We took Charlie into hospital after a few false starts with the bed situation; Charlie went to theatre for her final op. After an hour we had a phone call of the research fellow to ask us to come back to the hospital, unfortunately they were not happy to proceed and had stopped the operation.
We again were so upset and were very frightened, did this mean she wasn't suitable and would now have to go forward for a heart transplant .....
On arrival at the unit we were met by her surgeon, Mr David Barron who told us that he had become concerned that her artery had looked too narrow to complete the operation. We would need to allow Charlie to recover and a month later she would come back into hospital and have a cardiac catheter and to have stents fitted to widen her artery. Once Charlie had recovered she would come back in and they would attempt the Fontan completion again.
We then had to get Charlie over the op knowing that she had had nothing done, those awful chest drains and all the chest pain, fluid restrictions etc etc. I was very upset. I wondered how much her little body could take; she was having her veins collapse and was becoming hysterical whenever a nurse walked towards her bed.
On July 24th 1.00pm Charlie went to theatre for her 9th Operation, I asked them to take care of my baby she is so very precious, after 5 hours she was taken to PICU. Charlie was taken off her ventilator within 24 hours and then moved to HDU. It was very hard getting her over the fluid restrictions and the three chest drains were awful she was in so much pain with them.
After 5 days her cardiologist advised me he wanted to remove 2 of her drains I told him it was too soon, she will have a huge build up of fluid and will have to go back to theatre I said. Charlie doesn't do the normal route, but you must have faith in her he told me. Within 7 days of open heart surgery Charlie was allowed home leave, we were absolutely amazed, we had expected a 3 month stay in hospital.
There are no more surgical options for Charlie, because her heart will only be functioning on one ventricle her heart will eventually tire so much that it will not function any more, the only option will be a heart transplant and we have all ready been told that the majority of children die before the hearts become available.
Life is hard; I think it's the not knowing that's the hardest. What if Charlie is not suitable for a transplant? She has had so much reconstruction work on her heart, when will she need a heart transplant?, will it be next month, next year, its very hard to imagine your daughter having to wait for another child to die & even harder to imagine your baby dying if a heart does not become available.
It is very hard as a mum to try not to think about what will happen when we get to this stage; some days are harder than others. They tell us at the hospital to enjoy her and enjoy everyday, but how do you spend each day knowing it may be her last.
It is very painful to think that unless medical science finds a cure for these children, we will lose our beautiful daughter when her heart tires out.
Thank you for reading Charlie's story and helping us to make a difference to all these special children
Sandra Ramsey