D-Day – on getting a diagnosis

Firstly, it’s only fair that I tell you that this is old news. Old news to me at least. Not massively old, say a few weeks at most but not something I learnt about today or yesterday. There is a reason for this delay which will become very obvious as this post goes on.

Our very own D Day arrived on a sunny Friday afternoon, at around 3pm, just as I was doing some final cleaning before my in-laws arrived for a long weekend. The phone rang and I was annoyed as I had to stop what I was doing when I didn’t have enough time as it was. However, insignificant worries such as whether the place would be clean enough for my Mother-in-law (who is lovely just much MUCH better at keeping house than I will ever be) soon went out the window. It was a call from Jacob’s paediatrician. Some 5 weeks previously Jacob had extensive tests done under a general anaesthetic; an MRI brain scan, lumbar puncture (needle into spinal canal to remove spinal fluid), blood and urine taken for testing; all done at the request of his neurologist in an attempt to find a diagnosis. This call was the one we’d been waiting for,  it was the results.

I have to admit Jacob’s paediatrician was very skilled at this point, she told me so quickly what they had found that I didn’t have time to worry or panic about what she was telling me. His brain scan had shown a a definite diagnosis, a conclusive reason for his problems. Jacob had brain damage, in particular he had periventricular leukomalacia (PVL) – damage to the white matter around the ventricles in his brain. If you’re interested you can read more about it on the Scope website here.

She quickly told me that nothing we had done had caused this damage, that it had most likely happened between 20 weeks of pregnancy and when he was born. As a result of this finding, she said, they would now be giving Jacob a diagnosis of cerebral palsy. She explained that this finding was not what they expected as in many ways Jacob didn’t immediately stand out as a child who has cerebral palsy and he didn’t have many of the typical history of a child with PVL either not being low birth weight or premature. She pointed me in the direction of where to find detailed and reliable information on the internet (knows me too well!) and said we’d discuss it further at his next appointment.

It was after this phone call that my in-laws arrived, which was probably a good thing as it stopped me going into immediate negative thought free fall and largely because I didn’t have this alone, panic time I think I have dealt with the diagnosis better than I might otherwise have done. Serendipity if you like.

Over the next couple of weeks what I wasn’t expecting was for old upsetting thoughts and feelings to come rushing back. Thoughts and feelings that I thought I had dealt with and moved on from. The feelings of grief for the child and family life we might have had, thoughts of why me/us/Jacob. Negative, pointless and angry thoughts that I hadn’t had in several years. Whilst my husband, very sensibly, felt that this didn’t change anything and we should be grateful that at least it wasn’t a degenerative condition or one that Harry would need to worry about should he want children in his future; my head agreed with all these points but I had felt a cloud had come back over me and I couldn’t yet see through it. I had always had concerns about Jacob’s birth which was long (not unusual), where my waters had broken more than 24 hours before I was finally induced, where Jacob’s head was not engaged until later in labour (q unusual in a first pregnancy), where I had a 10 minute contraction at one point and had to have the syntocinon drug flushed out with saline, when Jacob was born with forceps with the cord around his neck. Very early on when Jacob was a newborn, I was worried that because he has unequal pupils it meant that something had happened to him. The diagnosis almost felt like a justification of my early worries, that I had been right all along in thinking my darkest thoughts about his birth.

It’s for these reasons, that I haven’t written this post until now. I needed head space to think through what I felt, to explain it all and frame what getting a diagnosis for Jacob felt like. Also, to move away from feeling upset and angry towards a more positive attitude that focusses upon dealing with the hand I’ve been played. I still have questions, and I feel we’re now at the beginning of a new journey of finding out and learning. I haven’t entirely reconciled myself to his traumatic birth and the part it might have played in all this, but as yet I’m also unsure if I want to go down the path of opening that particularly tricky can of worms.

Hopefully a diagnosis will be a way of helping Jacob to get more targeted support, may be it will make it easier to define his needs or for others to understand his difficulties. It’s too early to say.

We always wanted a diagnosis for Jacob; tiny bits of us didn’t in case we found out something really devastating, but mostly we wanted to know. Forewarned is forearmed and all of that. We’ve now had our D-day, and do you know what? It is just IS. That’s just Jacob, that’s how he is. I don’t even feel that he should or might have been different, even though maybe somewhere in a parallel universe, shitty horrible luck didn’t happen and his brain didn’t get damaged. Of course, I wonder what our life would be like in his parallel world, what MY life would be like, but who knows? It might have been worse. He is, after all, a gorgeous, beautiful, cuddly, affectionate boy and I am grateful for him every day.

A beautiful boy