What Impact Does A Premature Baby Have On Siblings?

Doctors, teachers and other parents give up their time to ensure brothers and sisters don’t feel forgotten.  By Natasha Hinde

When babies are born prematurely or with life-threatening conditions, their siblings can feel left in the dark and parents are flung into a state of disarray: endless feeds, tests and having to learn how to care for the tiny human in the incubator become top priority.

It can leave mums and dads feeling emotionally torn: the baby has to be their focus, but their other children also need attention at what is equally a difficult time for them.

Jo Shellum, 36, knows how that feels. In October 2017, she launched Noah’s Star, a project which provides support for siblings on the neonatal intensive care unit (NICU) at Birmingham Women’s Hospital.

She has since built a team of 50 volunteers – and counting – who help families by playing with children, providing support to parents, and even making drinks for NHS staff rushed off their feet trying to save lives.

In July 2015, Jo gave birth to twin boys. Noah died just 30 hours after he was born due to a heart complication, while his brother Oscar spent 12 weeks in the NICU after he had a stroke at three days old; he now lives with cerebral palsy.

Jo’s eldest son, Ben, was nine at the time. One of the biggest challenges she faced was “the feeling of being torn between the boys”.

“We were dealing with the grief for Noah, but also managing our feelings around Oscar being really poorly,” she says. “We were also managing the things Ben was hearing and seeing. There was nowhere for Ben to escape to, no-one to give him support, other than us. So it often meant he sat listening to the machines and the conversations.”

The family lived in accommodation on the hospital premises for six weeks, during which time Jo recognised a lack of sibling support services; when she relied on her family members, she felt like she was “pushing” her eldest son away.

Following conversations with the hospital, Jo was invited to set up a volunteer group to give other parents and their children a helping hand.

“Volunteers go around with a trolley and issue a bead to parents while talking to them,” Gemma explains. “For every blood test or X-ray, and for every day they are on the unit, the parents get a card to fill out and then the volunteers issue a bead. When the parents leave they have strings and strings of beads, which represent their journey.”

The experience has been really rewarding for Gemma: “You always feel like you’ve made a difference – even if you’re just here for an hour. One of the nurses said the only criticism she could give is that we’re not here 24/7.”

On leaving the ward, one new mum clutches her a baby with oxygen tubes coming from its nose and says they have been staying in the hospital for over 100 days. Their baby is smiling and so is mum. She nods towards the volunteers, grins and says: “They’re amazing”.