The prequel to VSD diagnosis
My last blog was on what happened on the day Sebastian collapsed at home and had to be rushed to A&E after contracting what turned out to be Bronchiolitis. However this was as a result of 3 months, post natal, of failure to correctly diagnose what he actually had, namely a large Ventricular Septal Defect.
Therefore I'd like to talk about those 3 months leading up to that day.
I will just say the pregnancy was normal and no issues were picked up at any scans. This is quite normal for some VSD due to the size and position within the centre of the heart. There are ways more sonographers can possibly spot these things and a charity called Tiny Tickers are doing sterling work in sending a special doll to sonographers to help teach them how to spot these things.
After the birth all the usual new born checks were done; sex, weight and health in general. The paediatrician didn't find anything out of the ordinary. We subsequently learnt this is entirely normal for a VSD, the tell of which is a loud murmur when listening through a stethoscope, but the blood pressures in new borns are not yet leveled and mask any problems within the heart for several weeks.
And so the usual days post natal followed as we all got to know our new bundle of joy.
The weekly check ups by the midwives did pull up the initial concern of weight fluctuations, and so begun the blame game, namely we, or rather Julie - as she was breast feeding, was obviously not doing it right! We already had one child who had been breast fed entirely successfully, but apparently she was getting this one all wrong!
Sebastian was struggling to feed. He would fall asleep after only a short time due to the effort incurred, and he wasn't getting much when he did feed. After around 3 weeks of back and forth to the hospital for more midwife appointments than I can remember, by sheer blind luck a midwife was on shift who is trained in tongue tie. She looked at the results of his weights over the preceding weeks and said, lets check for tongue tie. He was indeed tongue tied. This meant he couldn't stretch the tongue out of his mouth as he would normally do when feeding, which made it very hard to get milk.
At this point I will break off to have a mini rant about how all midwives are not trained to think about the possibility of tongue tie in a baby that's not putting weight on, and is fluctuating and even losing weight. It still astonishes me it's not a basic requirement on the teaching course, and they have to subsequently do an additional voluntary course to learn about tongue tie! There was one midwife in the entire midwife led unit at our local hospital who was trained in tongue tie, and this is why it was absolute pot luck she was on shift the day and time we attended. This cannot be deemed acceptable and is one of the many reasons this hospital was put into special measures.
Anyway this, as we subsequently found out a few months later, was a false positive. After the initial relief at thinking we'd found the problem, and having gone through the weeks previously with being patronised and it being heavily inferred we were failing as parents, we really hoped this would be the answer. Alas it wasn't to be and his weight continued to be static at best.
Looking back at photos of him now we can see just how gaunt and unwell he looked, but we all have 20/20 hindsight!
So, it got to the Standard 6 week check up with the GP. Sebastian went along and despite his poor weight related record the GP found nothing out of ordinary and signed him off as fine.
I still wonder about this. But we spoke to his initial heart consultant here and he said it was "possibly 50/50 whether the GP should have heard the loud heart murmur by then or not". I think he was being diplomatic, but it is what it is and I have to try to move on.
I suppose really what I want to say of this initial 3 months in the run up to his eventual collapse and final diagnosis, is there should be more checks in place when warning signs like he was showing are there. Why is it not flagging up the possibililty of a heart condition and to be put on a watch list.
Why is the natural reaction of many hard pushed, time short professional midwives etc. to just blame anything and anyone else and patronise the parents by inferring fault on the parents side?
I still feel bad for Julie and the emotional wringer they put her through. Being told you're a bad mother is a terrible thing indeed. I can't imagine what she felt inside, tho I know how chewed up I am about it. The short staffing issues within both our local hospitals, the immense pressure the medical professionals are under, I can see why they just fob stuff off and merely hope for the best in the long run! I do try to see it from a struggling, put into special measures hospitals point of view, but in the end failing to do the basic requirements is what is causing a lot of the bigger, serious problems to then arise, that then require a big team to fix.
Look at our case. A call of 999, an ambulance team and ambulance car paramedic due to how serious Sebastian was. The whole A&E team. Emergency X-ray and CAT scan. The cost of all that due to a failing hospital with under trained staff failing to pick up on 3 months of warning signs!
Therefore I'd like to talk about those 3 months leading up to that day.
I will just say the pregnancy was normal and no issues were picked up at any scans. This is quite normal for some VSD due to the size and position within the centre of the heart. There are ways more sonographers can possibly spot these things and a charity called Tiny Tickers are doing sterling work in sending a special doll to sonographers to help teach them how to spot these things.
After the birth all the usual new born checks were done; sex, weight and health in general. The paediatrician didn't find anything out of the ordinary. We subsequently learnt this is entirely normal for a VSD, the tell of which is a loud murmur when listening through a stethoscope, but the blood pressures in new borns are not yet leveled and mask any problems within the heart for several weeks.
And so the usual days post natal followed as we all got to know our new bundle of joy.
The weekly check ups by the midwives did pull up the initial concern of weight fluctuations, and so begun the blame game, namely we, or rather Julie - as she was breast feeding, was obviously not doing it right! We already had one child who had been breast fed entirely successfully, but apparently she was getting this one all wrong!
Sebastian was struggling to feed. He would fall asleep after only a short time due to the effort incurred, and he wasn't getting much when he did feed. After around 3 weeks of back and forth to the hospital for more midwife appointments than I can remember, by sheer blind luck a midwife was on shift who is trained in tongue tie. She looked at the results of his weights over the preceding weeks and said, lets check for tongue tie. He was indeed tongue tied. This meant he couldn't stretch the tongue out of his mouth as he would normally do when feeding, which made it very hard to get milk.
At this point I will break off to have a mini rant about how all midwives are not trained to think about the possibility of tongue tie in a baby that's not putting weight on, and is fluctuating and even losing weight. It still astonishes me it's not a basic requirement on the teaching course, and they have to subsequently do an additional voluntary course to learn about tongue tie! There was one midwife in the entire midwife led unit at our local hospital who was trained in tongue tie, and this is why it was absolute pot luck she was on shift the day and time we attended. This cannot be deemed acceptable and is one of the many reasons this hospital was put into special measures.
Anyway this, as we subsequently found out a few months later, was a false positive. After the initial relief at thinking we'd found the problem, and having gone through the weeks previously with being patronised and it being heavily inferred we were failing as parents, we really hoped this would be the answer. Alas it wasn't to be and his weight continued to be static at best.
Looking back at photos of him now we can see just how gaunt and unwell he looked, but we all have 20/20 hindsight!
So, it got to the Standard 6 week check up with the GP. Sebastian went along and despite his poor weight related record the GP found nothing out of ordinary and signed him off as fine.
I still wonder about this. But we spoke to his initial heart consultant here and he said it was "possibly 50/50 whether the GP should have heard the loud heart murmur by then or not". I think he was being diplomatic, but it is what it is and I have to try to move on.
I suppose really what I want to say of this initial 3 months in the run up to his eventual collapse and final diagnosis, is there should be more checks in place when warning signs like he was showing are there. Why is it not flagging up the possibililty of a heart condition and to be put on a watch list.
Why is the natural reaction of many hard pushed, time short professional midwives etc. to just blame anything and anyone else and patronise the parents by inferring fault on the parents side?
I still feel bad for Julie and the emotional wringer they put her through. Being told you're a bad mother is a terrible thing indeed. I can't imagine what she felt inside, tho I know how chewed up I am about it. The short staffing issues within both our local hospitals, the immense pressure the medical professionals are under, I can see why they just fob stuff off and merely hope for the best in the long run! I do try to see it from a struggling, put into special measures hospitals point of view, but in the end failing to do the basic requirements is what is causing a lot of the bigger, serious problems to then arise, that then require a big team to fix.
Look at our case. A call of 999, an ambulance team and ambulance car paramedic due to how serious Sebastian was. The whole A&E team. Emergency X-ray and CAT scan. The cost of all that due to a failing hospital with under trained staff failing to pick up on 3 months of warning signs!
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