I gave birth by emergency C section in the height of lockdown. Although far from ideal, it was a successful birth and arrival. For what feels like now as the briefest of moments, we were in awe of how perfect she was, and still is. However, the blissful moment was replaced by panic and heartache as we were told that something wasn’t right. She wasn’t getting enough oxygen, she had a lung infection, her legs were deformed (their words, not ours) and she wasn’t behaving how a baby usually behaves, she was described to us as “floppy”. She was whisked off to the ICU and we visited her everyday for hours on end at time.
Without answers we spent the time not with her doing what you’re not supposed to do, but what you can’t help but do - online research. We ruled out Congenital Myotonic Dystrophy early on. That’s a genetic condition, we would know if one of us had that, right? This just goes to show how misunderstood this condition is.
Meanwhile, after three painful weeks, thankfully she began to breathe on her own, she was successfully cured of her lung infection, she would receive treatment for her legs (talipes AKA club foot) and was also successfully treated for jaundice which had also developed. We dressed, bathed and fed her (via feeding tube since at this point her muscles hadn’t built up the strength to suck) - and generally just trying to be normal first time parents, at least as much as the ward could allow us to be. It was around this time that Daisy’s paediatrician asked to meet us in another room, in private. I knew right away that this wasn’t about to be a friendly chat and nervously tried to mentally prepare myself. You can’t really...
We were handed a piece of paper printed and photocopied from the Muscular Dystrophy Website. The first sentence from that sheet that leaped out at us, said that a fifth of children with Congenital Myotonic Dystrophy would die within their first year. Before the doctor could say very much at all, my partner almost immediately asked if this was the case. We count our lucky stars that thank goodness, he was able to reassure us and that for Daisy, that would not be the case.
In fact now, writing this today, I would never have dared dream she would be where she is now. Every single day, Daisy home with us since a month old, we see her go from strength to strength and surpass all expectations. She was breastfeeding properly by 2 months, off her feeding tube by 4 months, now at 10 months she can sit up, clap, high five, say “Mama”, “Dada” and ba (for bath)! She’s eating solid food and is on the cusp of learning to crawl; that is now that the boots and braces to treat her legs and feet have gone down to part time wear. Right now, we are cherishing every moment, because we know that the reality of this disease is that it is a degenerative condition. There is bound to be tougher days, when finding positives is going to seem impossible, so we don’t allow ourselves to think too far into the future. Right now, Daisy is a bundle of energy and laughter and she is continuously making us smile with her quirks and her mischief. Lockdown has given us extra time to really embrace all of it. We realise how incredibly lucky we are to have Daisy in our lives. I couldn’t imagine a world without her.
Since discovering I have the gene, diagnosed with the adult onset version a lot of things have fallen into place and make sense to me now. My Dad has also been diagnosed and it’s also suspected that my half brother, aged 15, has juvenile onset myotonic dystrophy. I would say it’s better the devil you know.
Cure DM offers a little light at the end of the tunnel. We tentatively hope there will be a cure or at least an effective treatment. Until then, we hope Daisy can continue to surpass all expectations and be the sweet, sprightly, determined and mischievous little girl for as long as possible. She has all our hearts completely and we will give her all the support we can muster, whatever happens.
