The Alexa Trust

The Alexa Trust is a UK Charity set up in memory of our baby daughter, Alexa, who sadly passed away last year due to being born too small, too soon and having too many setbacks.
For our first project we are raising money and awareness for parents who spend time in Neonatal, by releasing a charity single, Express Yourself, available to download from midnight on 18th August 2016.

My story of tragedy...
'Having been diagnosed with severe acute preeclampsia at 25 weeks, 4 days’ gestation, I was told the only thing that could “cure” the disease was for my child to be born. My organs were failing fast, but knowing that she wasn’t ready to be born gave as an almost impossible dilemma. We had to strike a deal, between me and my daughter and try to find the right time for her to be born to save both our lives'.

'From being snug and secure inside my womb to being thrust into the world happened so fast for our little girl, Alexa. Although she was born healthily, the next few months would be an epic battle for survival. I cannot imagine how she must have felt when she was literally jerked from my stomach – all the noise, loud voices, beeping of monitors, bright lights, prodding and poking. What a welcome’.

A tiny angel
‘It was another three days before I could see Alexa. The first time I laid eyes on her I was overwhelmed with fear and shock. She was the tiniest being I have ever seen, and I was in no way ready for her arrival. This initial feeling was immediately replaced by a love the kind of which I have never experienced before. I knew that I would do whatever it took to protect and comfort her. And that is what both my husband and I did.'

‘Spending time in the neonatal unit is like being on the biggest and fastest roller coaster you can imagine – and simultaneously being hit by a train. Nobody can ever be prepared for it, yet all parents find an inner strength they didn’t know existed and an unwavering sense of hope and positivity. During Alexa’s time in the NICU she experienced three major setbacks, but each time she fought back. I have never in my life seen such a fighting spirit - she had the stature of a little bird, but the strength and courage of a giant'.

‘From the first day I was encouraged to express breast milk. To say the least, manually expressing was as foreign to me as, well, milking a cow! I genuinely felt like a big ape slapping my boobs around. So I tried mechanical expression. After hours and hours of trying (and my boobs feeling like they were going to fall off) the first drop appeared and nothing more… So I collected this drop in a syringe and, in my wheelchair, I delivered this precious cargo to Alexa. It was the proudest moment of my life.’

A struggle to provide
‘You see with Alexa being born three months early, my body wasn’t ready to produce milk. But through the miracle of the communication between her and me my milk glands started to work. I knew the importance of mother’s milk, as it provides nourishment to grow, antibodies to fight off infection and much more. The nurses called this initial fat-rich milk “liquid gold”... Each day from then on I expressed 10 to 12 times, night and day. Sometimes it got tough as my milk production slowed down or stopped completely. I was in excruciating pain with cracked nipples and bruised skin from the constant sucking of the breast pump… But there was no room for failure because this simple act of expressing milk was almost the only positive thing I could do for our little daughter'.

‘The saddest part was that Alexa could not take my milk yet – she was just to poorly. So with the bigger picture in mind I carried on, and everything got frozen for later use. Hearteningly, Alexa could at least enjoy was the taste of my milk. After each session I soaked a cotton bud in the fresh milk and would swirl it around inside her mouth and she would eagerly grab hold of it with both hands and suck away. Not only did this provide pleasure and comfort for both of us but also the antibacterial properties in the milk kept her mouth clean from bacteria and soothed her dry lips. In fact, every time I approached her she would make sucking noises and I knew she wanted more. This encouraged me even more to produce and pump.’

The importance of never giving up
‘Expressing became mundane almost torturous, but during these long periods I started to notice a natural beat coming from the pump machine. It really got into my head and soon I began tapping my feet to the beat, humming a tune and eventually adding some silly words. Believe me, this kept me sane. I made a promise that if we made it through the next few months, I would write a song to this beat and try to raise awareness and money for parents who spend time in Neonatal'.

‘But 29 days after Alexa’s birth she lost her battle for life. Despite everyone’s efforts, she was born too soon, too small and had too many setbacks. Although we were – and continue to be – devastated, we are happy that she is free from pain and suffering. Her spirit can roam free and soar. We were truly blessed to have known her. Although she was so very tiny, she taught us many lessons, changed people’s lives and touch the hearts of all that came into contact with her.

‘And so, despite our loss, I came back to the song, and the thought of creating something positive from that terrible time. I hope this song will give women all over the world the strength to keep on expressing and breastfeeding no matter what. It’s painful and difficult sometimes, especially when your body isn’t ready for it. I think it’s a fun song with a funky beat and a clear message, which I hope will make you want to tap your feet or even get on the dance floor. We have to enjoy every precious moment we have.’