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Beth's Story

My mum insisted I go back to the doctors on the Monday evening…I felt silly, they had already said there was nothing to give her! I was then told to take her to Bristol Children’s Hospital (then at St Michael’s Hill) to get her looked at, as he was not sure if it had gone to her chest and he could also hear a slight heart murmur. So off we went, at this stage Beth had hardly fed for 24 hrs and was looking pretty bad. To top the lot it started snowing heavily….we live by Cheddar and the main road wasn’t prepared for the snow…but managed to meet up with my husband in Bristol before continuing to the hospital. Cutting the story short again….after several tests they decided that Beth probably did have a heart murmur and had broncholitis and WAS poorly, so arranged for her to be admitted to ITU and we were told that she would probably need to be intubated as she needed a rest! All of this happened in a bit of a blur…and then Dr Rob Martin (cardiologist) arrived to scan her….his findings just “washed” over me and I had to ask him to repeat it all again to Stuart (my husband) when he returned…..by the way, in true Beth fighting fashion she did not need to be intubated. We were told that Beth had a congenital heart defect, known as Tetralogy of Fallot…hole in the ventricle and narrowing of the pulmonary artery in short…I think! She also had broncholitis (not sure if that’s the right spelling), and depending on the results may need treating with a “head box” air borne antibiotics….even through it was a virus. Beth was RSV + so did need treating….for 3 days at 18 hours a time, so we ended up in hospital for 2 weeks. Her heart defect wasn’t really a problem at this stage…and we were told that she would probably need surgery when she was 18 months.

Meanwhile….Beth ended up back in hospital because of spasms she was experiencing (because of the heart condition) and ended up on medication. She then had a cardiac catheter to “check out” what was happening. By the time Beth was 6 months old we were given a date for her correction operation…brought forward due to the problems that she was having and also the expertise of Mr Pawade!

The big day arrived….what a nightmare…lots of tears and fears!…..but Beth didn’t really know any of this at 6 months, so that was easier on us as parents. The operation went to plan and then we were allowed in to see her. That is a picture that will always stay in my mind…she looked so helpless…and with a great big “cut” down her tummy, but you quickly look past all this and see the positive recovery signs. Beth had no major problems and was back on a main ward quite quickly….and then home. We only had minimal medication for her after the surgery and this was quickly withdrawn when everything was settled.

I now had my very healthy, noisy, naughty!!! Baby girl…and very pink!! (She was always very blue before).

Beth has done everything that “normal” children do…even fast speed fair rides that are enough to send my heart racing. She is very active and has never seemed to be held back with her energy levels….so all seemed well….until she was 7.

Then further tests showed that Beth would need more surgery to reconstruct her valve and do a few other bits and pieces. Initially, we were not convinced and asked the “team” to re-discuss Beth’s case to see if she really needed the operation…we could only see a healthy little girl. The answer came back as “Yes” and just before Christmas after Beth’s 8th birthday she went back to Bristol, but this time the new hospital. I found this time around very distressing, as Beth was totally aware of what was happening and was extremely emotional…..made or the more difficult as a friend from school had died in the same hospital earlier in the year due to meningitis. Its not easy when your daughter is cuddled up to you and says “ mummy, I’m scared I’m going to die”…..I have tears even now when I am typing this.

BUT…..all went extremely well and Beth was an angel of a patient (I wasn’t expecting that) and was home after a week. She even went back into school the week after to sing in the choir for the Christmas play (under my watchful eye, as I didn’t want anyone accidentally banging into her).

Beth has gone from strength to strength….represents her house at school sports days, plays in all the school teams (loves hockey) and has her own pony that she competes on. We also ski each winter, which she loves and even manages with the cold.

The future…Beth is now 11 and at her last check up was doing well. She had a MRI scan last year and is due for another in a years time….with the “possibility” of needing a valve replacement…..but she / we will cross that bridge if and when the time arrives.

The Heart Circle have been a great group to be involved with….as a parent and a “helper”…..there for the families and children!….but Beth in particular likes to be involved and feels “special” to be part of the group.


Hayley Aston – mum of Beth

 

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