How twin with Down syndrome was saved by her brother

Born with a life threatening condition, Milou’s twin brother was on hand to help.

Here, Kim, 45, tells the story in her own words.

There was so much crying. Sure, newborn babies are often unsettled but this was something else.

‘Milou had a rough night,’ the nurse told me on the phone from the NICU again. I was so desperate to be with my five-day-old daughter but with her twin brother, Angus, not really allowed into the special care baby area, I was having a nightmare dividing my time. ‘Angus was restless too,’ I told her. ‘I really want to get them together. Maybe they’re missing each other.’ I might have sounded like a crazy new mum but there was method in my madness. As a twin myself, I knew the indescribable bond I had with my own sister, Bernadette. I had a feeling my babies were having trouble being separated.

It took five days before we could reunite them. Squirming and surrounded with monitors and tubes to keep her alive, Milou was a tiny ball of unhappiness. Angus, at three kilos, was her burly big brother. But cross and constantly wakeful, he wasn’t faring much better. However, as I placed him into the cot next to Milou, everything changed. It was as if they let out a collective sigh. ‘Everything’s okay now,’ I soothed. The wriggling stopped. Their cries calmed. As Angus felt his sister’s cheek touch his own, the two of them settled down to sleep. ‘This is amazing,’ I said to my husband Matt, now 49.

Smiling for the first time in days, we watched our babies relax together. We even managed to get our first family photos with their big brother, Thomas, now eight. ‘We have to be careful how much we touch Milou,’ I explained to Thomas. Born with Down syndrome and a heart defect which could potentially kill her, Milou desperately needed to put on weight for surgery. Incredibly, just holding her would use up calories and, at a tiny 1.4 kilos, she didn’t have calories to lose. ‘She needs to be 2.5 kilos before we can operate,’ the specialist had said. We’d been prepared for her having Down syndrome but this undiagnosed hole in her heart was a new and terrifying situation. ‘We can’t lose her,’ I sobbed to Matt later that week. Angus clearly felt the same, screaming the house down if he’d gone a few days without seeing her. ‘It’ll be okay,’ I’d say popping them in together at every chance I could. 

In the second week, Angus strained to give Milou a kiss on her cheek as he greeted her. It was so beautiful and their bond got a lot of attention from the nurses.‘Have you seen how Angus calms down Milou?’ I asked the doctor. ‘Yes,’ he said agreeing she required ‘twin therapy’. ‘I’m writing it up.’

After that, Angus was allowed to see her all the time. And with Angus by her side, Milou eventually reached the magic 2.5 kilo mark. So, on April 10, 2012, she had a six-hour operation to construct her heart properly. It was two months after her birth, but for me it felt like that day was the start of her life. ‘This is the moment she can start living,’ I said to Matt as we waited nervously for news. The surgery was a success, but recovery was slow. ‘Please can Angus stay overnight with us?’ I begged the ward staff. When permission was granted it took just three days for Milou to improve enough for us all to be sent home. ‘Twin therapy strikes again,’ I joked.

Back in their new shared room at last, the fun began. I found Milou giving Angus a karate chop that first day at home.‘Just because you’re better, you can’t start beating people up!’ I laughed. But as they grew, Milou became Angus’s protector. At nursery, she ruled the roost and made sure Angus was always included. 

Age two, Angus was moved into the toddler room without his sister but made such a screaming fuss, Milou had to be moved up too. ‘We were worried about her needing him, but it’s the other way around now,’ I told their teachers. Today the twins are six, and Milou is doing a year at a special school until she can catch up with Angus again in mainstream education next year. Initially unhappy about it, I know it will also be good for them both to carve out an identity of their own. ‘I’m so lucky to be a twin and always have someone to share things with,’ Angus told me the other day. ‘And you’re happy Milou is your twin?’ I asked. ‘Yeah, she’s the best,’ he smiled.The feeling is completely mutual and I feel lucky too – to have them both.

Seeing their love and their close bond is incredibly special for me. And what can be better than a bit of twin therapy.