This morning my aunt, Sam and I arrived at Birmingham Children's Hospital at 11am in preparation for our consultation with Anna's paediatrician. As Anna's weight and length was measured yesterday, the pre admission nurses didn't really have much to do with her today, so we were sent through to the doctors waiting area. We were called in at around 12pm. Our paediatrician gave Anna a check up, testing her muscle strength in her limbs, listening to her chest and checking her level of head support. We explained the areas we thought she was making progress, however minor it may be. The paediatrician listened and agreed, but also thought she was going backwards in some areas too. She asked us if she often crosses her legs at the ankles, which she does. I have noticed this since the beginning. It is this in particular that has crossed my mind time and time again. From this question, I knew what was coming, so I mentioned it first. "This is why I have thought cerebral palsy is a possibility.". We all sat back down when the paediatrician began explaining to us what had been discovered.
"You mention cerebral palsy. There is a very high possibility that this is what we're looking at" and we progressed to look at Anna's MRI images. They clearly showed that she had more fluid than normal around the back of her brain, and the folds of the brain were much smoother than normal. I asked on a level of mild to severe, what are we looking at, are we on the more severe side of the spectrum? I already know the answer before she tells us. "Possibly" she says. And surprisingly, I'm okay with that. I suppose because it is what I've been expecting all along. One of Anna's blood tests show that she has been exposed to cytomegalovirus at some point, but in order for them to determine that this is the cause of her brain damage whilst in utero they need to go back and retest her newborn heel prick sample. So we sign the consent form to allow for this. The neurological disorder is mentioned again, along with the possibility of a metabolic disorder. Anna has had two more blood tests today to check for signs of these, and we are going back to see a neurologist at some point in the near future to discuss the possibility of these illnesses. However, in not so many words, I think we already have the answer. If CMV shows up in Anna's first blood sample, we will know for certain that this is what has caused our beautiful baby's disability.
We still do not have a confirmed diagnosis. The answers we need are just out of reach, but we have a better understanding of what to expect. Today I haven't cried. In fact I am happy. I am more than happy, I am over the moon that we are finally getting somewhere! I will not be returning to work. I am trying to get hold of my employer to arrange a meeting where I can explain our situation. At first I was a little upset about this, those of you that know me well know that I have just completed an access course in nursing and health and biological science. My plan was to continue to university at some point in the not too distant future. I had finally found a job I enjoyed and that I actually felt good at. But now I feel blessed. I still get to be a nurse, except it will be on a one to one basis with the most perfect little patient in the world! And who knows, she could surprise us yet! Whatever happens happens, we cannot change her brain, it is the way it is forever, but I love Anna's brain as much as I love the rest of her. Yes it will be difficult, yes there will be days where I feel like packing it all in and giving up, but I genuinely think that this little girl will be the making of not only me, but our whole family.
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