Tuesday, 18 December 2007


Today I signed a consent form. A medical consent form. The laws surrounding consent are a bit complicated; as a fostercarer I am able to sign consent forms for anything relating to school, for permission to take photographs, for emergency medical treatment, but not for elective medical treatment. I can agree to a child having the 'flu vaccination or MMR but not holiday jabs. I can agree to alter doses of anticonvulsants, but I cannot give permission for a child to stop all medicines against the wishes of their doctor. I can consent to an emergency appendectomy, but not to a routine tonsillectomy.

Today I signed the consent form that will enable the surgeons to go ahead and give Little Fish a Percutaneous Endoscopic Gastrostomy tube (PEG for short). This is a tube straight through the skin into her stomach, through which I can give medicines and all liquids. Since birth, Little Fish has had a Naso Gastric tube ((NG-tube) tube up her nose and down her throat into her stomach). She's very good with it, she pushes it back down herself when it comes out, she holds it in place when the tape works loose, she tucks the dangly end back down her vest when it comes out. But it's supposed to be a short term option.

The surgery has risks for Little Fish; it's quite a minor op but anaesthetics can be dangerous when you require a ventilator to breathe at night. Whilst she has been in fostercare, no one has been willing to sign the consent form on her behalf. When she moved in in February I was able to sign the form as a prospective adoptive parent, but the surgeon was unwilling to accept my signature as I was only a fostercarer. Meanwhile the NG-tube has caused ongoing problems with her ventilator; it pushes the nasal mask out of position and causes it to alarm more often. So we fasten the mask more tightly than we would otherwise need to do, which in turn puts pressure on the NG-tube, which has now caused sores to track up the sides of her nostrils. Nothing major and they will heal, but if left much longer they will scar, and meantime they are uncomfortable. We have to tape the tube to her face, which makes her cheek sore, and she has developed allergies to the three most popular tapes we use for this. So, it's a short term risk (not being able to get off the ventilator) vs long term benefit - less pain, less risk of developing more allergies, less facial scarring, more effective overnight ventilation, and more independence - with a tube into her stomach Little Fish will be able to feed herself, with a tube up her nose Little Fish's arms are not long enough to hold the syringe above her head). It's a risk I am willing to take, and it's a choice I know Little Fish would prefer. There's also the visual aspect of it - a PEG is hidden by clothing, an NG-tube is visible to all, and strangers judge the child by it. It is suprising to me how many people think the NG-tube (a very thin yellow tube up one nostril) is actually providing oxygen to the child! I don't think her medical needs are anything to be ashamed of, they don't need to be hidden for fear of what other people will think. But I do think that she has a right to privacy, and a more discreet tube will give her that.

Which is a long back story to the much shorter story - today I signed the consent form. I gave permission for my daughter to have this future surgery. I decided whether I would consent to tissue samples being used for research purposes, I decided whether or not students could be present for the surgery, and I decided whether or not I would allow blood transfusions to be given if needed. It was all entirely my own decision.

And then, in the very last box, under "relationship to child", I put MOTHER.

I've had children for 8 years now, but this is the first time I have ever been able to put Mother into the little box. I don't need to cross out the parent/guardian box and write fostercarer over the top, I don't need to find a social worker to sign the form for me, I don't need to consult with other family members. I just sign, and write Mother.

A nice start to the day.


Tina said...

It is great isn't it?
I remember he first time we did too!

Lauren said...

I bet that's a great feeling! Glad the op can finally go ahead.


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