Saturday, December 22, 2012

I'm Still Really Angry

Before Victor was diagnosed and everything was normal and fine, we saw a child health nurse which is what's usually done when you have a baby. Their job is to come and visit you on baby's 10th day of life, check to see how things are going, write it all down in the 'Purple Book' which is the child's health record and give you 'helpful' tips on how to care for the baby. It's a pretty simple job.

Unfortunately, the child health nurse I got with Victor was completely incompetent even for this simple task.

When she came to visit us when Victor was 13 days old, we placed him on the scales and saw he had actually lost weight. Losing weight is normal for a baby in their first few days, but they should start to re-gain that weight shortly after coming home from the hospital. The child health nurse did not seem concerned. She said it was probably due to us using a different scale, and we should weigh him again in a weeks' time. I told her about the strange poo I had been seeing: not at all like a normal newborn poo. She dismissed this concern.

This little series of events went on for four weeks. Every Thursday I would trek over to her clinic to weigh Victor, and each week he had lost more weight until he had dropped off the growth chart entirely.

At no point did she express any concern. At no point did she recommend I take him to a doctor. At no point did she say this wasn't normal.

By the time his newborn screening had been processed, he was four weeks old and still far below his birth weight. I look back on photos we took of him during that time, and I am shocked at how sickly he looked. Pale and gaunt, a rash covering his tiny expressionless face. He barely woke, he smiled wanly at Felix, he slept and ate and screamed until he was swaddled in layers of blankets.

I spent every night looking up possible illnesses on the internet. I told Phil that I was really worried about him but couldn't really explain why. Nothing I looked up seemed to fit, and I was being told by the nurse that he was fine, so I tried to not worry.

When we finally discovered what was wrong, it took me a while to remember the nurse. But then I did. And I started getting really, really angry at her. There was clearly something wrong with my baby. He was losing weight, excessively. He was not thriving. He was very unwell. The doctors and nurses at PMH were shocked that she had told me that was normal. They wondered what on earth was going on out there, in the child heath centres?

Even thinking about her and going back to the centre made me so upset that I became shaky, but he was scheduled in for his six-week checkup with her. I decided to keep the appointment and tell her what had happened.

"He has cystic fibrosis," I told her. "He is pancreatic insufficient, it's why he kept losing weight."
"Oh, so it's nothing we did then," she replied. "Nothing wrong with the milk or anything."
This was so far off point that I really had no idea what to even say back to that. She was so disinterested in me, my child and the diagnosis that there was really no point to us being there anyway.

I never expected or wanted her to diagnose Victor with anything. That is not her job and clearly beyond her scope. What I wanted her to do, was to say at some point, that his weight loss was not normal. That his poo (which she never looked at) was not normal. That I was not being crazy. That we should take him to see a doctor, find out why he was losing so much weight.

I am so grateful for that newborn screening. I don't want to think about what could have happened if we'd never screened for cystic fibrosis, and if I had continued to listen to that woman.

That is why I don't think she should have her job any longer. If she can't recognise the basic truth that a baby should be gaining, not losing weight, then what exactly is she doing there? What is she saying to other parents who come to her with concerns about their babies? Is she telling other parents that it's fine for their baby to drop right off the growth chart?

If she continues with that standard of work then she is going to seriously harm a child one day when she brushes aside the parents' concerns as well as clinical symptoms like she did with Victor and me.

We have not been to any further appointments with her, but I hate knowing she is still working there and still doling out advice to other parents. I hate that she ignored us completely, put my child's health in danger, and just couldn't care less about it. I want her out of that position before she does any more damage.

I don't think about her often, but when I do, I get incredibly angry and outraged. I have her full name and signature in Victor's heath record, and I'm seriously wondering if there's anything I should do about her.

1 comment:

  1. I'm sorry this nurse is an idiot. Unfortunately, there are more like her out there than I wish there were. It's the one thing I've learned from having a chronically ill child. The best advocate your baby has is you. Sorry you're so angry. Hang in there. :(


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