My child with Supra Ventricular Tarchycardia (SVT)

I’d always dreamt of having a little boy. A little mummies boy who looked up to me and only me. Most women want a little girl to follow in their footsteps, for me it was always a little boy. So to say I was excited when I found out he was finally coming was an understatement.

His birth was super quick, just gas and air, students watching, screaming, all the usual and finally he was there. Struggling for air but there! We celebrated with high fives, we’d done it, we were already talking of home when he turned blue and stated to go floppy.

My heart tore in two, sat naked on a hospital bed watching as 2,3,4,5 and eventually 6 doctors came rushing in working on my poor little baby. Talking as if he wasn’t mine, as if I didn’t exist. I remember watching as if in slow motion rushed away, not a word or even a look to myself, or partner. Even the midwife looked shaken, ‘he’ll be fine she said, we’ll keep you updated’.

Updated on what I wasn’t even sure. They began to stich me up, and I remember asking at this point if my son was alive and ok! I think they finally realised what they had done and showed a little more compassion, for the mother who had just given birth and had her son taken in such a traumatic, cold way.

6 hours we waited for news, eventually a midwife sent us to the special care unit, I couldn’t even remember what he looked like, we didn’t know his weight but we had chosen a name. Theo, my little superstar. We cried tears of sadness and joy when we first saw him in his incubator. He looked so big compared to the other babies as the only full term baby, coming in at a healthy 8lbs. Finally a doctor arrived to tell us what was going on.

‘Your son has supra ventricular tachycardia, we are talking with Manchester about his medication and we hope to be able to treat him here, not have to transfer. He’s stabilised now. We haven’t decided if you can breastfeed him yet, we’ll see how he goes the next few hours.’ With that she was gone???

We were lost, we had to check with the nurse how serious the condition was and if it was life threatening. She reassured us we’d be home within a few days and Theo would be fine. It took another 7 weeks in hospital before he could go home. To say the experience was traumatic would be an understatement. I suffered greatly and sadly the whole experience led to PND again.

4 years on and Theo still has the condition. He’s medicated to keep it under control but still has break throughs when he’s tired and stressed.

What upsets me most is the mental scars it left him with. He’s petrified of knives, needles, anyone in a uniform and being alone. The melt downs he experiences at just the mention of the above are quite scary. He finds school very difficult but keeps trying. We all have such a strong bond because of his condition and that I am very grateful for. He’s such a happy little boy when he has mummy, daddy or his big sister around but struggles with new situations and anything out of the ordinary.

It seems the unpredictable nature of his condition, teamed with the strict routine of his medication has really taken a toll on his mental health. Sadly we’ve received no support and get told time again he’ll grow out of his phobias.

Because the condition is classed as non life threatening we have been left to it. The damage it has put on my mental health and Theo’s is what hurts the most. In an ideal world we’d both be working with a CBT specialist, but we cope and we make the best of our situation. I know there is much worse in the world and I’m just happy to have my amazing son in my life. He lights up any room with his smile and personality, which makes the hard times so much easier!

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