As I was less than a year old at the time of my operation I do not personally remember what happened, however my Mother wrote an account of what happened at this time and here it is……
Katie was born nearly 8 weeks early weighing 3½lbs. She progressed well but we were told she had a heart murmur but it probably wouldn’t be a problem. She did well when she came home but was very slow to feed. When she was 4 months old she got a cold and chesty cough and was put on antibiotics by our GP but during a feed she went blue and limp after a coughing fit. I held her upside down, thumped her back and she started crying but I rushed her to North Middlesex hospital where she was born. There we were told after an x-ray and examination that she was in heart failure and would be transferred to Great Ormond Street Hospital. Martin my husband, Katie’s father had arrived by this time and we followed the ambulance not sure what we would find when we got there. An ultrasound showed a large hole between the bottom two chambers of her heart. With drugs her condition improved but we were told she would need open heart surgery at some point.
Over the next few months Katie was taking regular medication, fed very slowly only gained a little weight, had regular check ups and several hospital admissions. When she actually started losing weight it was decided she should have further investigations at GOSH. A cardiac catheterisation showed the hole was bigger than expected and that she should have the operation to repair this asap. We were relieved something was to be done but worried that things were worse than they expected. Before her operation the surgeon explained how they planned to ‘patch’ the hole with a synthetic material. To do this her heart would have to be stopped and opened and she would be on a heart-lung bypass machine.
The day of her operation was the worst day of our lives. When she was taken into theatre Martin and I were very aware that we might not have her back with us. We knew the operation would take about 4 hours and it was an amazing relief when we were told all had gone well and she was back in intensive care. We were reassured when she responded and recognised us as we thought she would be asleep. She had a tube up her nose helping her to breathe and numerous drips and monitoring wires attached to her. The scar down the middle of her chest was covered by a dressing and two huge pipes were draining blood from her chest cavity. We counted 19 tubes and wires in all.
The surgeon told us that although the operation had gone well she was bleeding a lot from one of the chest drains but thankfully this diminished and she didn’t need another operation. We stayed that night although didn’t sleep much and the next day she really started to improve and some of the tubes were removed and she was breathing on her own. The following day her final drip was removed and she was allowed to eat and drink as she pleased. It also meant that I could hold her and the tears of relief streamed down my face as I gave her that first cuddle.
From here recovery was rapid and within a week she was back to her cheerful self again. Expecting to take her home 10 days after her operation she had her stitches out ready for this, however the day before she suddenly developed a temperature and so wasn’t allowed home. By the evening she had a runny nose and flu was diagnosed. She was given antibiotics to prevent chest complications were told she had to stay in until the temperature had been down for 48 hours. The following weekend we were finally allowed to take her home and she was still on two lots of heart drugs but was a totally different child. She was finally eating normally and was much more active. Now 3 months after her operation Katie is crawling and catching up fast. She is gaining weight and cutting down on her drugs. She still gets very chesty when she has a cold but responds much better to antibiotics and is generally very well.
I think it was only after she finally came home and was so much better that we realised how bad things had been during her first year. The memories of the bad times are fading, but we will never forget the skill, care and kindness provided by Great Ormond Street Hospital.
