Home » June 2013 » D-Day – on getting a diagnosis

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

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9 thoughts on “D-Day – on getting a diagnosis

  1. Hello, it’s nice to meet you. It took me a full year to share my sons diagnosis of PVL I definitely understand wanting to figure out what it means for you before sharing with everyone. This is not a disagreement, with anything your doctor is saying…it’s just a noted difference from my sons team and your sons team. My son does have a PVL dx, but, so far, does not have a CP diagnosis (he’s 2 and is quite delayed) – do the two always go together for your provider? I’m only asking since you said he didn’t have the typical symptoms of CP. Research I’ve seen has shown a frequent co-diagnosis, so I’m wondering how they explained the link. Thanks for anything you can share.

    • In response to your PVL and CP question. I was told Jacob has cerebral palsy as a diagnosis: he has general developmental delay (approx 2 years delay) but is even more delayed in his gross motor skills and with his speech. He has very few words and even his Makaton is a bit woolly. His significant motor problems are what has prompted the CP diagnosis I believe rather than just the PVL. Jacob crawled at 13 months, walked at 2 years and only now at 4 years 7 months is climbing onto furniture, trying to run etc. He has an unstable gait and in turned left leg as well due to hypermobile hips. He just isn’t stiff at all, if anything he is floppy looking although the neurologist felt he had normal tone.

  2. What a fantastic blog. My son is 6 and has been under genentic investigation since around 5 months, we just want a diagnosis so that he can recieve all the support that he needs, and even though the genetic doctors don’t undertsnad why…we just want to “know” at the end of the day.
    This blog has given me some hope of someday we will have our D Day.
    Wish you all the best in your new journey and it is true what you say….they are still our little joys at the end of the day and we will always love them x

    • Thank you for your kind comment about my blog :-). It’s funny, I had almost reconciled myself to the fact that we might never get a diagnosis or we may wait a very long time for one, I think the shock that we got one was probably greater than the actual diagnosis itself. Are you a member of SWAN UK?

      • Hi!
        Yes,we are members of Swan UK, still got the regitration forms to fill in but I am finding the facebook group very helpful.
        I can’t help but get wrapped up in my son not having a diagnosis, feels like we gets “bits if this and bits of that” where support is concerned…very frustrating!
        Just going to keep hoping that one day we will have a diagnosis!

  3. Sending all my love to you and your family at the moment.

    I suppose the positive thing to look at now is Jacob will get all the help and support to lead as much as a normal life as possible.

    Thank you for linking up with The Weekend Blog Hop

    Hope to see you again this weekend.

    Laura x x x

  4. Pingback: D day - On getting a diagnosis | SWAN UK

  5. Pingback: Reflections of the truth | oneoffordinary

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