The majority (80%) of parents whose babies needed to be cared for on neonatal intensive care units (NICUs) think their mental health has suffered as a result of their experience. 

Nearly a quarter (23%) were diagnosed with anxiety, 16% with posttraumatic stress disorder (PTSD) and 14% with postnatal depression after spending time on the NICU, according to the survey of 589 mums and dads with experience of neonatal care, by baby charity Bliss.

Katie and Jonathan Jones’s son Ray was born at 27 weeks gestation in 2017. Fears over reduced movement meant that Ray had to be delivered by emergency c-section.

“I don’t think I’ll ever get over what happened on the neonatal unit,” said Katie, from Cardiff. “We have seen things that no parent should go through and as much as they try and shield you from what’s happening on the ward around you, it’s not always possible.

“I now have anxiety. I am emotionally scarred and so is my husband. I look at Ray and think how incredibly lucky we are, but I can never get over what we went through.”

“Our world turned upside down from the moment Ray was delivered. During his three month stay in hospital we felt emotionally and physically drained,” Katie continued. “I’d wake up hallucinating and would hear the sound of alarms in the shower.”

The survey also revealed the lack of support for new parents, with 62% of respondents reporting they had no access to formal psychological support (such as counselling or talking therapies) when they needed it whilst their baby was on the neonatal unit – something Katie can relate to.

“From my experience I don’t feel there is enough support for the parents of premature or sick babies while their baby is in hospital,” she said. “The only people we could talk to were the nurses looking after our baby.”

Bliss’s survey found that 45% of parents said they had no access to formal psychological support when they needed it since leaving the neonatal unit.

Alice Clements, from Gloucester, gave birth to her daughter Isabelle at 33 weeks gestation in 2014. Suffering with severe pre-eclampsia, Alice’s body began to shut down so the decision was made to perform an emergency c-section.

“Isabelle was in hospital for four weeks. I spent 10-12 hours a day sat next to Isabelle’s incubator alone,” she says. “Some days I didn’t talk to anyone but the nurses and after Isabelle came home I sank into a deep depression.”

“When Isabelle was six months old, I received six sessions of free counselling, which was a lifeline,” Alice continued. “I couldn’t afford to keep going after the six sessions were over so my recovery was put on hold.”

“When I returned to work I developed severe anxiety and had at least two or three panic attacks a day. I started to have flashbacks of my pre-eclampsia, delivery and the neonatal unit and was finally diagnosed with PTSD.

“In July 2016, I finally had enough courage to see another counsellor and had weekly counselling for 13 months. I built myself back up right from the ground and eventually felt ready to have another baby. In December 2017 I had my son and now my family and I are stronger than ever.”

One in eight babies are born needing neonatal care in the UK every year. All parents on neonatal units should have access to psychological and social support, including a trained counsellor, according to national standards set by the British Association of Perinatal Medicine.

However, Bliss’ past research shows that no nation in the UK is reaching these standards. In England, 41% of neonatal units said that parents had no access to a trained mental health worker and 30% said parents had no psychological support at all. In Wales, 45% of neonatal units are not able to offer parents access to psychological support of any kind. In Scotland the picture is bit better: 12 out of 13 units have access to a trained mental health professional of some kind, but access to these professionals is often inadequate to meet demand. And in Northern Ireland, five out of seven neonatal units do not have dedicated access to a mental health professional.

Caroline Lee-Davey, chief executive of Bliss said: “The shocking findings of our latest research demonstrate the vital need for better mental health support for parents whilst their baby is on the neonatal unit and beyond. 

“Bliss calls for every UK Government to ensure that mental health support is available to each parent who has a baby in neonatal care.

“We are currently producing new information for parents about mental health that will be available later this year. In the meantime, we continue to recruit and train volunteers who provide direct support to parents with babies in neonatal units across the country.”