New community support group for families who have had sick and premature babies

Additional specialist support for families who have been through the difficulties of having sick and premature babies is now being delivered in Northamptonshire’s acute hospitals and in the community.

The University Hospitals of Northamptonshire (UHN) – a group collaboration between Kettering and Northampton general hospitals – now has a specialist Neonatal Clinical Psychologist supporting the neonatal units at both acute hospitals. 

The development follows the Ockenden Report which recommended hospitals do more to support families going through the many stresses, and often trauma, associated with having a sick or premature baby in hospital, for days, weeks, or even months.

Such services are being developed across the country with the support of NHS England. In Northamptonshire the University Hospitals of Northamptonshire, in August 2023, appointed Neonatal Clinical Psychologist, Dr Mel Wiseman, to serve both NGH and KGH’s neonatal units.

Since then she has been developing the service across both neonatal units and has also now set up a new collaboration with Family Action Supportive Steps to offer a Neonatal Community Support Group. This is based in the Wellingborough Family Hub in Penrith Drive, Wellingborough - which is located between the two hospitals.

She said: “There are now recommendations that every neonatal unit in England should have specialist psychological support for families who are coming to terms with the immense stresses that can result from having a new baby who needs 24/7 care in an unfamiliar neonatal unit environment.

“This can bring with it great fear and trauma and, in some cases, concern about whether their baby will survive. At the same time parents may also be struggling to understand medical explanations of their baby’s problem and what all the machines that surround their baby do.

“Family arrangements can also be put under pressure if other children need to be looked after while a baby is in hospital and parents try to deal with both simultaneously and continue to work.

“Both mothers and fathers suffer psychological pressures around neonatal admissions and will often need care and support and have many questions that need answering.”

Nationally Bliss statistics show:

• Parents with a premature baby are 50% more likely to experience psychological distress compared with parents who do not spend time on the unit
• 80% of parents' mental health got worse after their time on the neonatal unit and 35% said significantly worse

Dr Wiseman said: “We know that many factors can combine to have a significant impact on people’s mental health and wellbeing both during their baby’s stay on NICU and afterwards.

“And that is where specialist psychologists can help. We enable people to understand why they are feeling the way they do, why that is so common for people in their position, and what sort of things they can do to help deal with that.

“By delivering such support we aim to reduce the stress that families may be experiencing and support the bonding process with their baby through what is often a very challenging time.

“Helping people navigate this period in their lives can help prevent the potentially harmful psychological impact of all this stress and help people to cope and keep going alongside their baby until the family are discharged from hospital and beyond.”

Community Support Group offers help after hospital

After leaving hospital parents can also feel delayed trauma, may struggle to cope with their new responsibilities, and want reassurance they are not alone.

Dr Wiseman said: “We know that may mums and dads continue to be anxious and fearful and really need some continued support outside of hospital. (***see editor’s notes)

“And that is why we have developed the community support group so that people who have just left hospital, or may be continuing to struggle with the impact of an earlier admission, can have somewhere to come for support and advice. This helps them to realise they are not alone in feeling the way they do.”

The first community sessions are being held on the first and third Friday of each month at the Wellingborough Family Hub from 2.15pm-3.15pm. The group's first session was on Friday, July 19, 2024.

There is no need to book and sessions are aimed towards parents of babies aged 0-2 years who have had a neonatal admission to any neonatal unit. All parents are welcome with or without bringing your baby.

Families have been very grateful for the support received

Since her appointment in August 2023 Dr Mel Wiseman has directly supported about 60 families who have experienced, the often unexpected situation, of having a premature or sick baby,

Emily and Graeme Newton from Kettering were one of the first families to attend the Community Support Group in Wellingborough after their baby Ernie was born on June 10 and was admitted to the Neonatal Unit at KGH for two weeks.

Emily, 31, had a difficult birth because she had severe polyhydramnios (where there is an excessive build of amniotic fluid that surrounds the baby in the womb) which meant she was in increasing pain before being admitted to hospital for a caesarean section when her son Ernie was born at 37 weeks.

Ernie had to go straight into NICU so Emily could not see him right away following her caesarean so dad Graeme had to keep her up to date by text message.

Then Ernie had a number of problems which meant both parents were constantly worried about him during his stay on NICU.

Emily said: “It felt like we were being hit by one thing after another and there was a lot of emotion, it was so hard.”

Dr Wiseman let the couple know about the Community Support Group and they attended it as one of their first family trips outside of home or hospital.

Emily said: “It was just incredible. It immediately felt like a safe space. It felt like the first time I could breathe. There was no pressure to take part but it very quickly became apparent that other people had been through things similar to us.

“We were very much still processing what we had been through and had felt so alone because, unless you have been through it, people can’t really relate to you. You can be in a dark place. I feel very passionately about the importance of this service. It helps you to understand that what you are feeling is normal after what you have been through.”

Graeme, 38, said: “It was very helpful to me as a father. At times we had to make difficult decisions and I had to think about both my wife and my baby. I think generally there isn’t as much support for dads, so the support group was very beneficial. It helped me to talk about things I had felt openly for the first time.”

Holly Scott and her partner Reece had experience of neonatal unit care at Leicester Royal Infirmary, Northampton General Hospital and Kettering General Hospital when their twins Darcie and Delilah, were born 10 weeks premature on February 15.

Darcie and Delilah are rare nonochorionic monoamniotic twins (MCMA) – where both babies shared the same placenta and also the same amniotic sac (pocket of fluid) – and needed continual care for two months because they were initially unable to breathe and feed unsupported.

Holly, 22, from Mawsley near Kettering, said: “When Darcie and Delilah came back to Kettering I was referred to Mel and she was there for us during the month they were in NICU.

“I think having a sick baby in hospital is the most traumatic thing parents can go through. After my caesarean at Leicester I was apart from them for the first few days.

“And because they were so premature they were struggling in many ways for about two months. It is very hard when you are spending 10 or 12 hours a day in hospital with them and it is taking them so long to improve,

“It is a time when your life is in that hospital room. As a parent the last person you are thinking about when your babies are critically ill is yourself so the last thing you would ever do would be to seek psychological support elsewhere.

“Having Mel walk into the room and sit with you and talk whilst you can stay with your babies, was absolutely life changing for me. It also helped Reece who was struggling to bond with the twins and Mel helped him to do that.”

Sarah White, 38, from Northampton, gave birth to 7lb1oz Arabella on February 7. Arabella was identified as needing life-saving care right away because she had meconium aspiration syndrome, where a baby inhales fluid in the amniotic sac.

She was rushed to a neonatal intensive care unit in Nottingham because no beds were available locally where she was stablised for seven days before coming back to Northampton General Hospital where she spent a further three weeks.

Sarah said: “You don’t expect to go from preparing for the birth of your baby to your baby being on life support, it is a horrific experience that hit me and my partner very hard.

“When I met Mel on the unit it wasn’t quite what I expected. It wasn’t just a chat. It was like I had 12 laces of questions all pulled together into a tight knot. Then Mel helped me untie that knot and deal with all of those threads.

“She worked with us in partnership and helped me so much to deal with the stress of it all. I think the service she provides is invaluable and everyone who goes through NICU should have access to it.”

And staff get more support too...

One often forgotten aspect of working in Neonatal Units is the impact on staff of working with often anxious and stressed parents, and sick and premature babies.

The introduction of the Trust’s Neonatal Psychology Service has helped this as well because Dr Wiseman is able to support colleagues who, day-in-and-day-out, deal with the upset that having a sick or premature baby can have.

Asked to comment about her role and impact colleagues have written:

"Since Mel has joined the team I feel that this has focused the team to look further into the family so we can be more supportive and proactive helping our families. I have a better understanding of the challenges our families face and having psychological support has been hugely beneficial for staff and families."

"Mel is amazing and a huge asset to our team. Thank you for having the time to run these sessions for us."

How the service supports families and colleagues

At both KGH and NGH Dr Wiseman works with families and her neonatal colleagues to provide appropriate support.

Some of the areas where support is provided include:

• Monitoring and supporting those families known to be in difficult circumstances
• Supporting families who have previous difficult neonatal admissions including the loss of a baby or pregnancy
• Weekly input to neonatal multi-disciplinary team meetings addressing psychological issues
• Signposting and delivering information and self-help resources and contacts to families
• Providing staff support, debriefing, group and individual counselling, training and consultation with teams
• Joint work with partner organisations.