Cerebral Palsy

This is most certainly a medical condition with a host of challenges. I’ll start at the beginning because I know that this is something that I was curious about when Thomas was still in NICU and we were given a possible prognosis of cerebral palsy when he was a few weeks old.

At the time it was difficult to imagine how this would present itself and this I believe is everything to do with my very little knowledge on the subject as well as the fact that Thomas was and is still very young. Besides Thomas’s severe brain damage, the Dubowitz exam produced an abnormal outcome with decreased tone on the left, jerky movements and poor head control. He was immedaitely referred for a VNT (Visiting Neurological Therapist) upon discharge. At the time we were advised not to worry too much as this exam is often just a snapshot of how things are and that often premature babies do have poor control because they spend a lot of time sleeping. Okay, no worries then!

When Thomas came home he was 41 weeks getational age. Keeping in mind that I’m a first time mummy, I didn’t really know what was normal/abnormal and was advised on our first visit with the VNT that everything looked positive developmental wise. Thomas was about a month and ½ old. The VNT said that Thomas’ tone was symmetrically sound, legs kicking about well, and that the jitteriness wasn’t a concern as some or most newborns can be a bit shaky anyway. She also made it clear that it is very difficult to tell at this stage how he will develop.

We were given some advice on how we could support Thomas’ physical development. We also had a follow up appointment with Thomas’ neonatologist who detected some head lag and clonus in the left foot. Of course I’d never heard of clonus before this and was straight onto google to do some research. It didn’t really help at the time. I’m writing this in restrospect so bear with me! We had also moved to Auckland during this time so it had been about a month or so before we saw the next the VNT who is currently still with us! She was the only person among the many people we’ve met to actually be honest with us and use the words cerebral palsy. People in the medical field seemed hesitant to use this language and instead preferred to say, ‘developmental delay’. It was so confusing because I never knew what to say to friends or family because it never was officially diagnosed till later on even though I was pretty confident that Thomas has cerebral palsy.

I later came to realise that the hesitant nature was due in fact to the medical professionals being unsure as to how we as parents would feel with discussing Thomas’ conditions matter of factly. It wasn’t until we raised it a couple of times that I think perhaps the medical professionals came to appreciate that we in turn were comfortable to discuss these conditions openly and it was then that they were very open in return. I think it is important to note here that the medical professionals were doing their best with what they knew about us as parents at that time. I am aware now that they were trying to gently ease us through numerous diagnoses. Once the medical professionals knew that we were comfortable to talk about Thomas’ conditions openly that the language of cerebral palsy became official. It was a relief to have it acknowledged and recorded. This was when Thomas was around 10 months old. We still do not have an official diagnostic unpacking of his cerebral palsy but all four limbs are affected and they are spastic (tightness), essentially meaning that he has spastic quadriplegia cererbal palsy.

Quite honestly, with all the conditions that Thomas has, cerebral palsy would have to be the most challenging of them all. It can fluctuate too depending on how Thomas is feeling and so although therapy can be introduced, the progress is at times slow and can regress quite quickly when Thomas has an illness or break from therapy. Maintaining therapy within the home as an unqualified therapist itself is difficult and traumatic at times. Thomas will have days where he will cry so much that he turns purple and I’ve ceased therapy because it is extremely upsetting to see him so distressed. Because Thomas is unable to communicate specifically his needs, I am unsure whether he is in pain or tired. It is sometimes better for us both to take a break. I am not a trained therapist, and I have no idea how to read his body and his muscles’ spasticity. Everyday I work on specific movements for his body and integrating therapy into his play. He has specialised equipment to use and wear. I have already mentioned that all four limbs are affected but another area affected is the head. He does not have full head control and he is nearly two. This is an area of intense focus for us. His head control was improving but with recent surgery and bed rest, it has regressed.

Thomas is fully dependent on us to be transferred from different settings. He is carried like a new born. One day, we will need a hoist to lift him. He is just a little over 10 kilos.

Will he one day walk? I can’t answer this. Will he one day sit? I can’t answer this. Will he one day have full head control? I can’t answer this.

All I know right now is what matters most.

Is he safe? Yes.

Is he comfortable? Yes.

Is he happy? Yes.