You're to blame!

I am now 5 years into my CHD journey with my son. I am a member of a few CHD related charities and their forums on social media.

One thing that keeps coming up is new parents of a CHD child reporting the same thing we went through; namely so-called professionals saying directly or indirectly by inferring, "it's your fault!!" This is just not acceptable. This is a failure by the professionals to do their job or be correctly trained.

Are you one of these professionals or training to be one of these: midwife or health visitor?

If yes, then this blog post is aimed directly at you! Why? Because we the parents are not to blame; you are!

After our son was born he had undiagnosed tongue tie and more seriously an undiagnosed large VSD. The former would be a false positive for the latter in our case. As a result of these issues he struggled to feed, fell asleep quickly while feeding due to the effort required and lost weight or failed to gain weight accordingly. And we were regularly taking him for midwife check-ups in those first 6 weeks as we were so concerned. And what was the automatic diagnosis of these midwives?

Yes, that's right, all together now: "you're to blame!" "You're clearly not doing things properly or correctly!" More specifically my wife was blamed, as she was exclusively breast feeding.

Number 1: this was not our first rodeo! We already had a very healthy and happy daughter who had also been exclusively breast fed. But even if this was our first child, the arrogance of professionals to dismiss the signs and facts staring them in the face as simply parental failure, is staggering. Are they just so short of time, so short staffed and over worked its just easier to take this tack?

Worse of all, putting this professional failure and even parents to one side for a moment, the baby itself is being failed while all this is going on. The baby is continuing to suffer week after week.

Professional pride and arrogance to possibly admit a few weeks later when the problems are still there that maybe it's not the parents appears to be the main reason. That or maybe the midwives who've in theory had years of training to qualify simply haven't had the training to recognise either tongue tie or CHD symptoms. If you're a midwife who's currently bristling at me calling you out, then defend yourself, please? Is it your failure or a failure of training?

At 6 weeks old we then get tossed out into the big wide world and health visitors take over where the midwives left off: more failing to diagnose, recognise symptoms and blame the parents. Health visitors, please re read all the above and put your job title in the place of the word midwife, because you failed just as badly!

Why does it, in nearly all cases, take the baby finally getting too weak to cope and catching something like bronchiolitis, as in our sons case, that then hospitalises them for the CHD to finally be diagnosed?

One last thing for all you midwives and health visitors: Stop blaming the parents, and especially the mother, as your immediate first thought. Get trained on CHD symptoms and swallow your professional pride and admit that maybe you don't know everything!