We had our six-week appointment at the children’s hospital near the end of May to see how my boy’s heart was holding up after the valvuloplasty (every time I hear this, it sounds more like a vaginal rejuvenation job than a heart procedure).
I’ve been back and forth to the GP with my blood pressure (finally discharged from the maternity hospital at the start of June and, thank the universe, off all bp meds since then) and at one of my visits the GP showed me a letter they’d received from the children’s hospital about the heart problem. It opened by explaining that my boy had “severe” aortic valve stenosis. I suppose the speed at which everything moved once it was diagnosed indicated that it was quite bad but seeing it in black and white was a little shocking. My sister believes there would have been no point in them alarming us by divulging the seriousness of the situation and she’s probably right. I’m not sure in my sleep-deprived, c-sectioned state five days post-partum that I would have been able for that information.
At the six-week appointment, I made the rookie mistake of going straight up to the Cardiac Outpatients on the fourth floor with the little fella in my arms while my mother parked the car. The waiting room looked like a bomb had hit it: parents and children sardined along the corridor with few places to sit waiting for their appointments. It turned out the proper waiting room was being renovated, meaning the brilliant staff were having to manage a crazy situation, with good humour and efficiency as usual. I tried to check in and was told I needed to register at Outpatients back on the ground floor. So, down I traipsed and had to wait for my ticket number to be called, miraculously making it back to the fourth floor in time for my 10am appointment. I won’t make that mistake again.
When we were called in, we had to strip the poor little fella down to be weighed (not happy) and they did his ECG. His oxygen levels were at 100 per cent, which was reassuring. Then, out into the corridor to wait to be called for his echocardiogram. It was a fluke that we had his warmest, fleeciest blanket with us, as we were told to wait with him stripped down to his little nappy, presumably to speed things up once you are summonsed. Beside us was a couple up from the country who had had to leave their house at 6am. Their five-year-old girl has Down Syndrome and a heart condition that has required them to travel up and down to the children’s hospital over the years. They were in that day to find out whether she would need to undergo an operation. A lot of the kids in the Cardiac unit seem to have Down Syndrome and heart problems of varying degrees of severity.
We had our echo and my boy was noticeably livelier and more unsettled than the last time we did this, back when he was only four days old and too oblivious and/or exhausted by his heart problem to be upset. I had brought a soother, which we don’t usually use, and it came in handy for calming him down, though in a cute novice way he kept letting it drop out of his mouth.
Out again into the crazy corridor and then into an ante-room to wait for the consultant. I could hear him debriefing some student doctors in the next room and I think, though I’m not 100 per cent certain, I heard him say ours was one of the worst cases he had seen (after which I stopped eavesdropping). However, when we were finally called in, the news was great: if he had asked for the best result possible, this would have surpassed even those expectations. There was no backflow, which was remarkable; the pump was performing much better; and the gradient (pressure) was down to 25-30, which was brilliant. It isn’t possible to completely remove the narrowing, as this would cause leakage. In his opinion, we wouldn’t need the valve replaced for a long time and there was a chance that we wouldn’t have to replace it at all. I asked about the severity and the consultant said that really the only question in his mind the day we first visited the hospital was whether they should do it that day or wait until the following Tuesday. Gulp.
I asked if we could expect my boy to lead a normal life and he said yes. There was nothing to watch out for except “girls”. We were to come back in four months and after that, assuming all was still okay, every six months.
On our way out, we met the couple up from the country, who were over the moon. They had been told their daughter wouldn’t need the operation and had been discharged from the hospital. They were going to the zoo to celebrate before the long drive home. One little victory and one fewer problem for them to worry about in what is doubtless a tough life despite their daughter’s cuteness.
It’s a cliché but it really feels like a miracle to have a healthy child, even if mine has needed a little help.