Sunday, 26 October 2008

Diagnosis (Early Days #4)

Get It Down; 31 for 21

**First for some inadequate excuses. I have been poorly this week - in fact on and off since this time about 2 weeks ago... And when not feeling too rough, I have been really too busy trying to tackle a backlog of washing and other chores to justify sitting at my computer, catching up on '31 for 21'! So it's looking increasingly like '21 for 21' instead ... which actually sounds almost as good!!

And now I'll get on with this post, which I've been promising to write for about the last 2 weeks...

There had been no hint that anything was 'wrong' (or rather 'different'...) at the time Tom was born; so Mark and I spent the first 6 weeks blissfully unaware that our little guy was actually fighting for his life.

Looking back, however, I remember feeling a little bit concerned about the amount of hours Thomas slept; about the number of times he choked during his feeds, and about how 'floppy' he seemed to be. Of course when you don't know anything, and you're a 'new', hormonal mother of a 'new' baby, you just dismiss any concerns, and feel rather silly for even having them in the first place. You don't want to say anything in case the 'professionals' laugh at you and set out to prove you wrong. Because that'll only upset you, and you really, really don't want to get upset with that amount of hormones raging around in your body!!

Tom and I had a routine check-up at 7-8 weeks. Unbeknown to me, I think our Health Visitor Jo had already raised some concerns with the Doctor, and had probably even expressed her suspicions that Tom might have Down Syndrome... But it wasn't within her rights to tell me what she felt. So she said nothing.

Our lovely Dr Miller then set out to check Tom out thoroughly; she spent a loooong time listening to his chest and heart in particular. And repeatedly pulling him into a seating position from him lying on his back to see whether his head would 'follow' the rest of his body, or flop back... I'm 100% sure Dr Miller had taken one look at Thomas, and known immediately. But it wasn't really within her rights to tell me what she saw, and make a diagnosis; so she didn't.

She refered Tom to a Consultant Paediatrician at the same hospital where he had been born. She must have put 'urgent' on her referral, because we got seen pretty quickly!!
The Paed was one of the most professional yet delightful, compassionate doctors I have ever met. Having been told in Dr Miller's referral letter that Tom had a very significant heart murmur, Dr Kumar spent about 15 minutes just listening to his heart and lungs. And examining every inch of our tiny baby boy.

I remember the sense of dread slowly seeping into my whole being, and feeling clammy, and sick with worry, knowing that something was seriously wrong. Mark was with me through the whole thing, but I was hardly aware of his presence. Or of how he might be feeling...

We knew he was going to give us some bad news, but DS simply hadn't crossed our minds! Not in a million years did we ever imagine one of our children might have Down Syndrome... So when Dr Kumar gently told us that as well as having a significant heart condition, he was pretty sure Tom had Down Syndrome, it felt like a dark shadow had suddenly obscured all my thoughts and senses.

After finally giving us his diagnosis, which he said needed backing up by blood tests, Dr Kumar encouraged Mark and I to leave the room so we could react in private. When we did, I fell into Mark's arms, and cried, and sobbed, and wanted to scream at God that it wasn't within his rights to give us a child with disabilities! Mark just held me, too shocked to really respond to the news in his own way; it would take him much longer before the reality of it started to sink in properly. He was very quiet... and loved me in my grief.

Once we left the hospital, we drove around town for a while in a complete daze. Even though we knew the diagnosis wasn't 100% certain, we had no doubt it was nevertheless accurate - and that Tom's heart would need fixing. We had a child with Down Syndrome, who was going to need fairly urgent heart surgery, and who in the meantime was put on medication to stabilise the insane amount of fluid his heart was pumping round his body, putting his lungs under intense pressure...

It was a lot to take in.
Looking back, it still is...


  1. what a tremendously overwhelming experience for a mother and father....your story is very much a miracle, and no wonder you continue to get deeper, better and stronger - God certainly has carried you through some significant valleys.

  2. I'm so amazed by the experiences of those few I know who had diagnoses given to them more than a day or two after birth. What a strange range of emotions that must be to go through. Thank you for sharing your story. Isn't God great for bringing such joy from what was initially so painful??


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