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A Tale Of Two Births

14/08/2014 17:02 | Updated 20 May 2015

The Secret Diary of a Special Needs Mum - A tale of two births

My amazing son, who I'll call J, is three, and was diagnosed soon after birth with a relatively rare genetic condition. We don't yet know how it will affect him as he grows older, but so far he has battled an array of medical problems. One thing's for sure, our little family's life will never be 'normal'...

Our new baby daughter M was very healthy for 35 weeks. But, as is common, some jaundice developed and we were kept in hospital for eight days.

Thank God, M was allowed to stay with me on the postnatal ward - no special care unit or incubator was necessary for her, just transitional care nursing.

That short week brought back memories of what we'd been through with her older brother J - and the differences between then and now were so intense. I became very emotional.

At one point, M had to have a cannula put in her tiny hand, and was sleeping under a special jaundice light. I found all this so difficult to bear in my post-natal haze that I was in floods of tears - which made me realise how strong I'd had to be for J, who had been through a thousand times worse.

Because I hadn't been allowed to stay with him or breastfeed him, and he'd been in an incubator attached to so many tubes, so I hadn't even been able to hold him for the first week of his life, I'd seen everything done to him at a sort of remove.

Sometimes he was treated in the middle of the night when we were at home and we were only told what had happened the next day.

We weren't allowed to be there when he was ventilated right after his birth or when a long line was put in to drip feed him.

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Now, with M, I was with her like a normal mother - 24/7 - so I had to see every needle put in her and I couldn't just reach into her crib and pick her up for a feed and a cuddle.

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She wasn't actually terribly bothered – she is a pretty easy-going baby - but I wept more for what J had been through than what M was experiencing...

In his case, he'd had jaundice but we'd barely registered it, because it was the least of his medical problems; it was easily treated and wasn't threatening his life.

I felt silly thinking about the past in this way – my husband kept saying to me: 'But look at J now; that's all behind us – and M is doing so well'.

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But the truth is that what we went through with J in his first few months was so difficult for me that I am still deeply scarred by it and I imagine I always will be.

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The worst part for me as a mother was being separated from my baby, because he was so ill and had so many machines attached to him. To this day I cannot look at a photo of a baby in an incubator, let alone the ones we have of J in those days.

Having M with a cannula and under the lights this time around sent me into hysterics. (It didn't help that by this time I hadn't been outside the hospital ward in days.)

That's when I called in my good friend D, who I knew was the one person who would totally understand, because her son had been seriously ill in neonatal care along with J.

We met the day J was born, when he was in the incubator next to her son in intensive care. Her son A had been born at just 23 weeks; his twin had sadly not made it.

Like J, A was in hospital for his first five months, and he's now doing very well, despite some challenges. His mother D and I have remained close ever since.

When she walked into the ward with a bag full of premature baby clothes for me (we had given J's old ones away as I could not bear the sight of them), I knew it could not be easy for her to return to this place. It is as full of memories for her as for me...even more so.

I asked if it was hard for her and she confessed that just going up in the hospital lift still sent shivers of dread through her.

I knew the feeling. It was so brave and kind of her to come despite this, and her presence that day gave me the strength I needed to stop crying and start smiling and allow myself to relax and just enjoy my essentially healthy baby.

Soon we were out of hospital and I re-donated those premature baby clothes to the neonatal unit.

Click here to read previous columns from The Secret Diary of a Special Needs Mum.

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