Hi All
LONG POST ALERT!
I noticed this thread on the front page a few days, wrote a long detailed post and then my computer promptly deleted it! I'm back now and hopefully this post will work. I was meaning to come back and let you know how we're getting on but have been busy with work and baby.
Our situation has taken an interesting turn. I don't want to give anyone false hope as every situation is so different with HD and it is of paramount importance that you follow exactly what your health professionals advise. But I thought I should update, and nickinoo I really feel for where your friend is at right now, that was us ten months ago and I remember only too well that shock and fear so close to just having given birth.
When I posted we were thinking about weaning. Shortly before we started feeding DS solids, we had an appointment with our regular consultant. We had been advised that we might be looking at surgery around 6-9 months, and it would either be pull through in one stage or rectal myectomy. Whether it was a busy day or just a blip, but during our appointment it became apparent that the consultant had confused our son's case with another more serious one, and started talking about far more invasive surgery than he had mentioned previously. We were telling him our child was pooing pretty much every day and washouts (which were advised every 24 hours unless our child had a spontaneous bowel movement) were becoming less and less frequent. It was as if he (doc) simply wasn't listening. We came away from the appointment and immediately sought a second opinion from a more senior consultant at the same hospital, but in his private practice.
The difference has been extraordinary. He was already aware of our son's case and said to us that because the initial biopsy (not done under anaesthetic) was inconclusive it didn't necessarily mean our son had HD, and that around 85% of newborns admitted for failure to pass meconium in the first 48 hours do not have anything as serious as HD. He told us to suspend washouts, feed our child sensibly - ie, avoiding the four main constipators of Banana, Rice, Applesauce and Toast to start with - and let our boy learn to poo without intervention. He did of course advise this with reminding us sternly about doing a washout if baby showed any of the signs of entercolitis, something we had been watching for from day one. After four days DS started to poo every day, sometimes up to three or four times a day, and that was in March. We haven't looked back since. He occasionally goes a few days without pooing, but we give him a little bit of lactulose most days as advised by our consultant and he now eats EVERYTHING, even rice, all sorts. I am still breastfeeding him, but he has the odd bit of formula on days where I am working and haven't been able to express.
We haven't ruled out having another biopsy done - under anaesthetic - should DS ever get seriously constipated but at the moment it's not on the horizon. So it looks as if DS doesn't have HD or if he does, it is ultra ultra short segment that doesn't seem to be a major problem.
I must stress again that this is our particular experience and we follow our consultant's instructions to the letter. But I wanted to post an update because we were distraught in the first few months after our son's birth, dreading surgery we saw looming ahead, worried about what to feed him, whether it would affect his growth, and it hasn't been like that at all. But one of the great things about the NHS is how seriously they take anything involving babies, and I will always always be grateful that our son received incredible care at such a critical point. Still, I am extremely glad we got another opinion and really pushed to be listened to. It has made a huge difference.
I hope you and your little ones are all getting along ok.