What I wish I’d known

Friday 4th March 2016. This date will forever be imprinted in my memory. It’s the day we had our 20 week scan. After a difficult first trimester where I had weekly scans until 14 weeks, we hadn’t seen the baby on screen for 6 weeks so I was excited and a little nervous to know that all was okay.

The sonographer got started and we joked about how the baby was breech as Isabelle had been too. As she scanned over baby’s face, I thought I saw a shadow. The sonographer didn’t say anything but hovered over the picture for a few moments. My husband was the one that asked “is that a cleft lip?” After a very long scan, we were sent up to fetal medicine to discuss the implications of what had been found.

The weeks that followed were fraught with scans, tests and appointments. We met various fetal medicine consultants, specialist midwives, geneticists, our cleft team, paediatricians and many more professionals.

According to CLAPA, around 85% of cleft lip and palates occur in isolation. It became clear through more scans and tests that Isla was in the 15% of cases where clefts are linked to a genetic condition. Every scan we had (and there were many), something else was discovered; micrognathia (small chin), midfacial hypoplasia, fluid in her stomach, legs which measured weeks behind the rest of her – the list felt endless. The only surprise we had left was her gender; how we managed to keep from seeing that I have no idea! We had to make the difficult decision of whether to have an amniocentesis which we eventually decided against.

My pregnancy was filled with anxiety and dread of the next scan, of what they would find wrong this time. Upset and irritation at ‘helpful’ comments. Worry of what would happen when she was born. But despite all that, I tried never to lose sight of the excitement of our much longed for, incredibly special baby.

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So true!

 

So here’s what I wish I’d known.

I wish I’d known that whatever is thrown at us, we’ll deal with together.

I wish I’d known that although the appointments, surgeries and hospital stays are relentless, it makes us appreciate our family time more than ever.

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Family time!

I wish I’d known that I’d learn to brush off negative medical outlooks, that I watch the girls do things in their own time and when they meet those little milestones, it feels huge.

I wish I’d known that the impact on Isabelle would be different than how I imagined. Of course she has found it difficult but the love & concern she has for her baby sister is amazing.


I wish I’d known that family and friends rally round and are there through it all. They never tire of listening or helping in any way possible.

I wish I’d known that the anxiety and worry of my pregnancy would develop into the strongest, most protective bond. That not being able to breastfeed wouldn’t impact us in the ways I thought & we would find other ways.


I wish I’d known that when she was born, I wouldn’t even notice her cleft. That all we’d see was how much she looked like her big sister.

I wish I’d known that after her surgery, it would take me weeks to adjust to her new smile and even now, I miss her wide cleft smile. It was the first smile we ever saw. But that we’d feel so lucky to get a first smile twice over.

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After palate repair

More than anything, what I really, really wish I’d known is that the baby on the screen would be one of the strongest, most resilient little people I’ve ever known. That whatever challenges come her way, she will face them with her sunny personality and beaming smile that would keep us all smiling.

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3 thoughts on “What I wish I’d known

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  1. This has brought a tear to my eye. She is just amazing, you all are. I remember you saying to me, when I was diagnosed with the Low Papp A during pregnancy, that we’d deal with whatever was thrown at us because we had to, that’s always stuck with me, and I can tell that you do the same xxx

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