Feeling that you somehow should have been able to prevent or fix your child's disabilities? Familiar yes, familiar I reckon to most parents with a SN child. But normal?
I've done battle with it for a long time. My Nathan was absolutely fine until possibly the beginning of my long labour or even slightly before. He had more or less recovered from whatever had hit him as he was pink and bouncy at birth, not blue and floppy. This makes him a bit of a rare case as most similar cases happen through oxygen deprivation at birth. That's why it took them five days to find out why he kept having seizures in his first 48 hours - significant brain damage. My consultant's best guess is that my body doesn't cope well with labour and triggered an inflammatory response in Nathan's brain. So I felt I had let my precious baby down. My womb should have been a safe place, and it wasn't. At some point it became a dangerous place and there's nothing I could do about that.
A few years later I had a very early miscarriage. A good friend, knowing me well, said 'Make sure you don't blame yourself'. Which is exactly what I was doing. I hadn't kept the first one safe, so what made me think I could keep the second one any safer! It's worked through and behind me now, but that has taken a lot of time and a lot of pain. And so much wasted energy. At least now I only feel guilty about not doing his stretches enough, not spending enough time doing exercises, not spending enough time practising reading and talking...ah the usual gumpf.
Blame and fault are another game altogether. I have friends who are struggling with feelings of pain and anger towards medical professionals who didn't listen, didn't act, and then didn't take responsibility. It leaves them with an ongoing sense that it needn't have been this way. I feel grateful that I don't need to struggle with that. On one hand we all make mistakes. I make mistakes. If my mistake affects a client I grovel to the Court and ask for my client not to be prejudiced by my error. There is precedent for that, senior judges have said over time that clients should not be prejudiced by the mistakes and oversights of their representatives. So that sorts that. Me being embarrassed is ok as long as the problem gets fixed. A doctor or midwife making a similar mistake can have consequences that cannot be fixed. Oxygen starvation, brain damage, disabilities. A doctor or midwife doing so on an overcrowded, badly run ward while refusing to listen to the mother who thinks something is wrong is a tragedy for all concerned.
A woman is very vulnerable in labour. I remember lying on my back, helpless, connected to drips and incapacitated by an epidural while my baby got tired and distressed. I was confused, scared and totally dependent on the judgement of others. When I met my obstetrician some time after birth he put Nathan's heart monitoring sheets on the table and said I could probably find someone who would say that I should have a c-section much earlier in the labour. He was an experienced expert-witness, I'm a legal bird, it made the conversation easier. Crucially I feel that (unlike many!) I had good care, I had at least one midwife with me at all times, was given options and choices where possible and was clearly told when it came to that point that my baby was too tired and needed to come out now. I know I was monitored by a doctor for quite some time and I believe that a careful judgement call was made. Maybe a mistake was made, although I am inclined not to think so. I feel able to say that mistakes are made, and to let it go. I do not feel and never have felt an inclination to sue the hospital.
For some parents not suing is not an option, not because they are such vindictive people, but because their child has been left so profoundly disabled that 24h care is needed. Suing is then the only way to make sure that care will be there, because social care budgets simply do not stretch and as a result it is rare for anyone to get the care they need and deserve. So in a real way the NHS' insurers pick up the tab for the care the welfare system should be providing. False economy? With the current vicious cuts in funding this will only get worse with more parents being forced to take legal action to provide for the care needs of their children. And a culture of blame against medical professionals continuing. Not good for anyone.
So what am I trying to achieve with this rambly post?:
I'm calling those fellow parents of SN children to stop blaming themselves, to stop feeling guilty. If you could have prevented your child's troubles you would have done. You are good like that.
I'm calling for grace and empathy for overworked midwives and junior doctors who staff underfunded, understaffed, exhausted maternity department and end up making errors of judgement.
I'm calling for the government to stop funding managers and targets and to spend some money on the staff that is actually needed on the wards.
And for a universal amnesty on guilt. Guilt is like a thief in the night. It robs you of joy and leaves nothing in return. Grace not guilt, that's what I say...
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