Orlaith’s story

Orlaith was born 15 weeks early and immediately transferred to the Trevor Mann Baby Unit (TMBU) in Brighton for specialist neonatal care. 

She needed round-the-clock care from the team of doctors and nurses on the unit, having taken a turn for the worse during her second night on the neighbouring maternity ward. Thanks to the incredible care received by the TMBU team, Orlaith is now a happy three-year-old little girl. Here, in her own words, Orlaith’s mum Sian, has shared her story with us…

“Imagine your second night as a parent, watching your tiny bundle snuggled down sleeping – their rosy cheeks and cute little noses only a few feet away. Now imagine mine. Being woken at 1’o’clock in the morning by a midwife who tells me my 15-week premature baby is losing her grip on life and I needed to go to the neonatal (TMBU) unit immediately. I am told that she is deteriorating quickly and they don’t know how long she has left. My partner Carl had to drive in a panic to the hospital to meet us.

The intensive care ward is a big room full of beeping monitors, occupied incubators and doctors and nurses hard at work. Yet the silence of the room fell heavy on our shoulders as everyone listens to what we are going to say to this tiny little life. She is too poorly to be held or taken out of the incubator – what would you say?

Orlaith, by the words of the consultant, miraculously made it through the night, however things didn’t get any easier. Jump ahead to your child’s first immunisations, how guilty you feel watching tiny tears well in their eyes. You’d spend the rest of the day cuddling them and kissing their tears away. Now think of Orlaith’s daily injections, sometimes several, except we can’t comfort or hold her as she’s still too poorly, but her tiny hand grips tightly around our fingers. 

Orlaith received over 10 blood transfusions which ran through one of many cannulas she had to have to keep her going. She spent seven weeks on a ventilator that helped her breathe and kept her alive. My first cuddle with Orlaith was at seven weeks old. Her ventilation tube was taped to my chest and her wires made my skin red raw, but it was perfect. Carl had to wait another week before he could hold her. 

Orlaith was barely six weeks old and only a couple of ounces over the minimum weight when she went for her first operation. The specialist op took place in Southampton and they needed to cut a duct that flowed from her heart to her lungs. She also had two sets of laser eye surgery to save her vision. 

Eight and a half months of sleepless nights, constant tears, frustrations and sometimes happiness, Orlaith was finally allowed home. She spent a further year on oxygen, and had weekly appointments, hospitals visits, sleep studies and even diet diaries, but our 14oz little baby girl is now a thriving, confident three-year-old who has an enormous character and the drive to do anything she wants. 

We couldn’t possibly write about everything Orlaith went through, but what is obvious, is that without the help of the TMBU and the Royal Alexandra Children’s Hospital (the Alex) in Brighton, Orlaith definitely wouldn’t be here. When you’re expecting a baby, the neonatal unit is not something you even consider, however it’s likely someone you know will have needed or will need, that speciality care, whether it’s for a few hours, days or months. 

We have made friends for life with parents of other poorly babies, and it’s their support and encouragement that helps you through some of the toughest days. It is likely that we will need the care of the TMBU again if we were to have another baby, and I want to know that they will have the best equipment and training available in order to help my family – and so would you. That is why we took part in the Tough Mudder challenge to raise money for Rockinghorse at the end of September.

Even a small amount – a few pounds – will help support babies and children during their time in hospital. We raised £1,406 towards items Rockinghorse funds at both the TMBU and the Alex; from life-saving medical equipment through to toys and play equipment for the wards. We hope you will be able to support them too.”

If you would like to share your own story with us, we’d love to hear from you. Call us on 01273 330044 or email cheryl.piper@rockinghorse.org.uk.