“This experience has just made Leo more special and more loved” - Destiny’s Story

My son Leonardo was born at 30 weeks in June 2020, weighing 3lb 14oz, due to Vasa Previa and premature rupture of membranes (PROM). This was in the middle of a global pandemic where restrictions on visiting were still strictly enforced.

We knew early on that Leonardo would be premature, just not how many weeks premature. I always thought premature babies just went into incubators and continued to develop in an almost ‘artificial womb’. I thought as long as they were born alive, they would be okay.

The first questions I asked when we found out Leo would be premature was: “Will I still be able to hold him? Will he have to stay in hospital?”

My maternity consultant’s answer was “let me get a crystal ball” which, at the time I found very rude. He said it depends on his breathing, feeding and control of temperature. We met with neonatal doctors, and they spoke about different hospitals and levels of care dependent on the gestation he was born at. Still, none of this prepared us for the completely new world we entered. I know now that it would have probably taken a ‘crystal ball’ to answer my questions.

Quite soon after Leo was born, I realised how naive I was. I started to hear medical conditions and terms I’d never heard before: Necrotising enterocolitis (NEC), intraventricular haemorrhage, patent ductus arteriosus, longline, NG tube, ventilation. Apparently premature babies had a whole range of specific medical complications they were vulnerable to, but nobody had mentioned this before. We were transferred to Kings College in London and were reassured that if Leo needed surgery on his bowel, they could perform it straight away at his bedside, within the neonatal unit. How could a baby so small be put under an anaesthetic I wondered? How can they even operate on a baby so small - his organs must be too tiny?

We were then taken into the NICU to see Leo. It was a room that never slept, surrounded by tiny incubators, all producing different beeps and flashing lights - it was a sensory overload.

It’s crazy that today at one years old, Leo’s favourite things are flashing lights and saying ‘beep’. I was dressed in a face mask, an apron and gloves, I asked the nurse if I could touch him. He looked so small and fragile, he was covered with wires and tubes. I felt completely helpless - it didn’t feel natural - I didn’t know how to care for my own baby. I began to cry, “don’t cry” I was told because “stress can affect your breastmilk.” I thought to myself, I’m not planning to breastfeed… I had bottles and formula already bought at home. The nurse told me that breast milk is best for premature babies, so I went off to the ‘expressing room’.

Here I was sat beside five other women, half undressed trying to figure out how to use a breast pump. I had an emergency c-section a little over 24 hours ago, lost almost two litres of blood, however, I didn’t even have time to acknowledge the pain from that.

“Wow that’s amazing for your first time”, I was encouraged by a complete stranger sat next to me, as I managed to get 10ml of breastmilk.

“I miss the colostrum stage, mines just white now”, she said. I hadn’t even thought about how long Leo might need to stay; I was more concerned if he was going to live till the next morning.

I asked her if she’d be in hospital long - “five months, chronic lung disease” she replied. I hope Leo doesn’t have that I thought to myself, completely unaware of what it was, I don’t want him to be here for five months.

In the next five weeks, we watched parents around us collapse to the floor in hysterics after bad news, and I empathised with them. We also saw parents arrive with car seats ready to finally take their own baby home, and I often envied them. Those five weeks felt like a rollercoaster, Leo had ups and downs, progress and setbacks - I thought once you get to go home, the babies are okay, they’ve got through it all; I was naive to think that when Leo came home, he would then be a ‘normal baby’.

I didn’t realise that he would face developmental delays, have a weakened immune system and be more prone to certain illnesses. We are still frequent visitors to the hospital, as Leo has a very weak chest and often requires hospital treatment to stabilise him.

This experience has just made Leo more special and more loved. Every day with him is a blessing and a reminder of how lucky we are. He is strong willed, funny, loving and everything we could have wished for.

For those that haven’t seen prematurity first-hand, I really don’t think you can even begin to imagine it. I hope looking at it from my perspective will help shed some light.