After the devastating diagnosis over the Christmas period, I was ready to pack away every decoration and shred of the festivities before the New Year arrived. I felt sick looking at it all – the happiness and fun that we should of all enjoyed, had now turned into a dark and worrying trauma.
I began to research Honey’s particular defects. My coping mechanisms were kicking in, I am a control freak – everything in my life is planned out well in advance. I can’t bear surprises or unexpected events. Our family finances are projected well ahead, and becoming pregnant with Honey was part of the big plan. Honey’s illness came literally like a tonne of bricks, and the panic was suffocating. Things like this don’t happen in my family.
I realised after reading many, many medical journals that Honey’s heart defects were the ‘better’ ones to have, success rates in repair surgeries were extremely high and life expectancy was normal. The doctors kept saying ‘you do know she’ll have to have open heart surgery, don’t you?’, and I did. At that stage though, it didn’t really phase me. I just felt that it would be the answer to all her problems, she’d get fixed and we could all move on from this nightmare.
The cardiologists wanted her to weigh at least 4kgs to reduce surgical risks and, provided that she remained fairly non symptomatic, the surgery could wait a few months until she gained the weight. Fairly quickly however, it became apparent that this was going to be a hard feat.
Two weeks later, we were admitted to our local hospital which, quite importantly in our story, is not a specialist heart hospital. Honey had a troublesome cold which was making her respiratory rate quite high. Finishing a bottle herself was taking a long time, as she was just too tired to do it. Since she had not gained any weight, it was recommended that she have a nasal gastric tube inserted to help her get up to 4kgs. Seeing the distress and confusion on her face when they inserted the tube was one of the worst moments I had experienced to date.
A week later, when Honey was 10 weeks old and weighed a tiny 6.3lbs, a consultant from Bristol came to assess her health. The team had already discussed Honey at a weekly panel meeting – where Honey’s diagnosis had been presented to a team of doctors, surgeons and other professionals to decide on the right course of action – and they had decided that Honey would need open heart surgery sooner than planned. The surgery would be scheduled for four to six weeks time, in mid-February.
Initially I felt panic and cried, but I was also relieved – this would be the start, the end and the winning of Honey’s battle.
