Gloucestershire Maternity Voices Partnership are interested to understand more about the care offered to a new mother whilst she is an inpatient on the maternity ward with a baby in the NICU, after receiving feedback from a mother about her experience.

In March 2022, the MVP collated feedback about women and birthing people’s experiences during this time period of separation of mother and baby. We shared an online survey through social media platforms and held a focus group to discuss some of the topics raised through the survey in more depth.

We received feedback from 68 women and birthing people, who had given birth between 2013 and 2022. 91% of respondents had their baby on the Gloucester Delivery Suite, and 9% on the Gloucester Birth Unit. This report details the findings that the MVP collected.

Contents

Sharing information

MVP are keen to support the Maternity and Neonatal wards with the development of an online book for parents, where information can be made easily accessible to mothers during their maternity ward stay, which we hope will support women and birthing people during this challenging time.

50% of women and birthing people are discharged from hospital within 3 days of their birth. For these new mothers, there is a short window of time for pertinent information to be shared with them about their birth experience and postnatal healing, and how to best support their baby in the earliest days. There is also limited opportunity for them to feedback if there are aspects of their care which fall below best practice. It is important that there is a standardised process for caring for NICU parents, so that mothers are experiencing supportive and helpful care during their short stays. We hope that the online book will help staff to share relevant information quickly and support mothers in understanding what their care should look like whilst they are an inpatient. In contrast to this short stay, 50% of NICU babies stay on the neonatal ward for 3 weeks or longer, with one in five staying for more than 5 weeks. This gives maternity staff an opportunity to follow up with mums if information did get missed during the mother’s stay, or if birth conversations are needed.

Care and compassion

We asked women and birthing people if they feel like they were treated with care and compassion whilst they were on the maternity ward. 27% told us that they always felt treated with care and compassion. This is in stark contrast to the responses from the same question in our birth experience survey, where 65% of mothers tell us that they always feel treated with care and compassion. Only 3% of all birthing people respond with ‘no’ to this question, whereas 16% of NICU mothers said they never felt this way. We asked mothers to share with us what worked well for them. These are some quotes from respondents:

“Kindness from midwives and HCAs asking about my baby”

“Working medication/reviews around when I had to visit baby on NICU/be present for ward rounds and tests”

“The staff held my hand when I was crying”

“One HCA gave me a hug when I was having a panic attack”

“One lovely midwife left a note by my bed. It’s a small thing but it meant I had someone there for me.”

“Excellent care, so kind and helpful and thoughtful. I was given a private room as being on the ward with new mums and babies was upsetting me.”

Being around other mums and babies

Many of the written responses to the survey described the importance of not being around other mums with their newborns. Women and birthing people detailed the distress that they experienced when they had to leave their baby in NICU, only to be placed right next to a mother bonding with her newborn on the Maternity Ward. Many told us of their relief and gratitude for the opportunity of a private room and suggested that if a private room is not available, then perhaps a bay with other NICU mothers in would be the most supportive environment. This would reflect the experience of staying overnight on Nursery 5 in NICU, which most women and birthing people described as being a positive and helpful experience in an otherwise difficult time. These are some quotes from respondents:

“It is one of the worst feelings being separated from your children, not knowing if they are going to make it through the night and you aren’t well enough to get yourself downstairs to see them. At the same time you are worrying, you are surrounded by women and their babies. It was traumatising and I don’t think I will ever get past it.”

“I was only allowed to stay in the private room after I cried and begged the midwives. I do not think people who have babies in NICU should be made to be on a bay with other women and their newborns.”

The impact of kindness

Women and birthing people told us that it was important that staff understood the unique challenges of having a baby taken to NICU and the impact that clear and compassionate communication has. Mothers described how there were many practical challenges of being separated, and issues around support, as often partners were with baby and not mum. Some described how staff who went the extra mile to understand the difficulties and differences had a greatly positive impact on their experience on the maternity ward. These are some quotes from respondents:

“When I woke from after my traumatic birth I didn’t know where I was or where my baby was. I had to find a nurse because I was traumatised and confused.”

“My basic care was addressed in a satisfactory manner but nothing noteworthy or extra to mention, considering I was apart from my baby”

Women and birthing people described the emotional trauma of having a baby in NICU and how the kindness of staff who recognised this made a huge impact. Mothers described the importance of staff taking the time to ask about their baby’s health, but also to congratulate them on their new arrival and to ask non-medical questions, for example, does he have lots of hair or who do you think she looks like? Many women and birthing people described feeling forgotten about or unseen, and recognised how the midwives who took time to connect with them made a big difference to their emotional resilience in a very challenging time. These are some quotes from respondents:

“Not all maternity ward staff understood how hard it was being away from baby”

“We still matter even if we are not always in our bed or we don’t have our baby next to us”

“It stays with us forever. Please nurture, care for and reassure parents in a non-dismissive way…they need to feel heard at a time when they probably feel that they have no control and they have a lot to process.”

Involvement in baby’s care

Women and birthing people gave us feedback on the ways that they were involved in their baby’s care whilst they were an inpatient on the Maternity Ward. They told us about what supported them to be as involved as they wanted to be, and the things that presented challenges.

Only 23% of women and birthing people told us that they were taken to NICU for ward rounds every time. 35% told us that they were never taken. Mothers told us that attending ward rounds played an important part in their understanding of, and involvement in, their baby’s care. Women and birthing people described how difficult they found it when they were unable to attend these meetings with their baby’s clinical team and how this impacted on their sense of being an integral part of their baby’s support network.

Some mothers told us that they were not aware of the NICU ward round until after they were discharged from the Maternity Ward. We believe that it is important that women and birthing people are aware of these meetings and are offered the support needed to be able to take part in these, if they want to. This is a quote from a respondent:

“I was unaware of the NICU ward round til I was staying on NICU”

50% of women and birthing people told us that, when they were not able to attend ward rounds, they still felt informed about their babies care. Many described the importance of the NICU nurses’ role in keeping them updated when they were able to be with their baby. Some parents phoned the neonatal ward for updates and many relied on their partners to share information on their babies. One mother described how grateful she was that when she was too unwell to go to NICU, her baby’s doctor came up to Maternity to share information about her baby with her. Many women and birthing people described difficulties they faced in being taken to Neonatal by staff, and the emotional impact that this separation from their child had on them. This is a quote from a respondent:

“(I was taken to ward rounds) only when I insisted on this and I was made to feel like this was a chore”

Women and birthing people told us how important it was to them that communication was clear and accurate. Some described situations where this was not the case. This is a quote from a respondent:

“There seemed to be no communication between the two wards. Everyone I spoke to came up with a different reason as to why my son was taken to NICU. I had to keep asking what was happening.”

Cots on the maternity ward

We asked mothers about the presence of empty cots by their bed on the Maternity Ward. Nobody was asked about their preference for a cot to be kept or removed. 31% of people told us that there was no cot, and there was a strong preference that empty cots should be removed. Women and birthing people told us about the emotional impact of returning from NICU to look at an empty cot.

Food

Food is an important part of recovery after birth and when expressing or breastfeeding your new baby. 44% of women and birthing people told us that they were not fed at all, or not consistently. Even within the 56% that said they were given food, many described how this needed to be supplemented by food purchased themselves or brought in by partners. The key reason for these missed meals was that mothers felt ‘forgotten about’ or ‘missed out’ whilst they were with their babies in NICU. These are some quotes from respondents:

“I missed food as I was in NICU”

“They would forget me if I was down with my baby”

Medication

50% of women and birthing people said that they received the medication that they needed whilst staying on the maternity ward. As with receiving food, the main barrier for those who did not receive the medication that they needed was the practical issue of being downstairs with their baby instead of on the ward. Mothers described making the choice to suffer pain that could be better managed, because they did not want to leave their babies. Many talked about feeling forgotten and that NICU staff were chasing medication for the mothers. Women and birthing people described the impact that this lack of regular medication had on their physical healing and mental health. These are some quotes from respondents:

“midwives were too busy to either deliver medication to me on NICU or to collect me to take me upstairs. Only option was to go without (or miss out on time with my baby)”

“I have a very distinct memory of being told they had been looking for me and where had I been all day like I was a naughty child”

“I was downstairs in NICU so it was my own fault”

“The neonatal staff would ring up to maternity for them to bring it down to me during the early days after c section but it was forgotten”

Feeding a NICU baby

Having a baby taken to NICU often presents new mothers with a range of feeding options that they had not considered antenatally. For women and birthing people who choose to breastfeed, support in the earliest days with hand expressing and pumping, if needed, is crucial. Women are most likely to be spending more time on the Maternity Ward during these early days and need to receive accurate information and encouragement from maternity staff to get to grips with what can be a gruelling physical and mental task.

13% of mothers told us that they were not shown how to safely sterilise for their NICU baby. 3% told us that they were only told that information by NICU. Some told us that they were given incorrect information from midwives. Mothers told us of occasions where milk was expressed but unable to be given to baby because of this incorrect procedural information, which was heartbreaking for the parent. This is a quote from a respondent:

“I was wrongly advised about bottles by my midwife. Midwife said I should be reusing the ‘use once’ bottles”

69% of women and birthing people told us that they received support on how to express their milk. Some praised the midwives and HCAs for their guidance in getting started with this process. However, many said that this support was given to them on the neonatal ward and not the maternity ward, which presented problems for mothers who were not able to spend a lot of time in NICU in the earliest days. This is a quote from a respondent:

“Support was given on the neonatal ward, not the maternity ward”

54% of mothers told us that they understood how to get their expressed milk to their baby in NICU. Others told us that there were issues with the process or that milk was discarded before it reached their baby. Some mothers described how they felt there was not an understanding of the importance of milk reaching their baby in a timely manner, especially when, for many mothers, expressing feels like the only thing you can do for your baby in that difficult time. There is also a practical impact on any delays in milk reaching NICU, as babies may then need to be given donor or formula milk, which mothers described as finding distressing. These are quotes from respondents:

“When I was stuck on the ward at night I tried my hardest to hand express so it could be taken down to my poorly baby. When I achieved it I was told they would put it in the fridge until the next day. I was really upset about this.”

“They said they would take my milk down for me but they didn’t”

Approximately half of mothers were offered to loan a breast pump to support their feeding journey in NICU. Some women and birthing people described how midwives seemed unaware of this offer, and this caused added distress upon discharge, which is already a very emotional time. This is a quote from a respondent:

“When I was discharged from the maternity unit, the midwife did it very casually and did not understand why I got so upset about the thought of leaving my baby and going home without her. She knew nothing about the loan of a breast pump to help establish my milk supply and even suggested I buy one online. I had a panic attack and couldn’t stop crying… fortunately, the staff in the neonatal unit were amazing and leant me a breast pump and everything I needed to get going.”

Being discharged

We asked women and birthing people about their experiences when they were discharged from the Maternity Ward.

The responses were very varied and showed many differences in what was offered to parents after discharge. 27% of mothers told us that they were not offered the opportunity to stay at the hospital at all. Some mothers were not aware that staying on NICU was an option, whilst others wanted to stay but there was not enough space. There was a variation in whether women and birthing people wanted to stay in hospital or to return home and visit each day, but some who wanted to stay weren’t offered the chance to or made aware that this might be possible. Many mothers returned to stay in NICU before discharge and this opportunity was greatly appreciated by them. This is a quote from a respondent:

“There were no beds left for me. I was distraught going home without my baby.”

Financial implications

The financial implications of having a baby in NICU are far reaching. We asked parents if they were made aware of the discounted parking available to them whilst their baby was on the neonatal ward. 68% told us that they were. Some parents told us that they were not told, or that they found out a long time into their child’s stay. We hope that by including the details of this offer in the online book for parents, this information can be shared quickly and help to mitigate some of the financial challenges that NICU parents face.

Mental wellbeing

57% of women and birthing people told us that they were not spoken to by midwives about services or resources where they could seek support for their mental health. Mothers told us that when they did access support, there was often limited information available to them about the specific challenges faced by NICU parents. The standard midwife and health visitor appointments after birth where mental health is discussed are often disrupted by visits to NICU, and parents are often not immediately aware of the support that they might need whilst they are still going through their NICU journey. A study carried out by Bliss found that 80% of NICU parents feel that their mental health suffered after their experience, with nearly a quarter being diagnosed with anxiety afterwards. 16% of parents will be diagnosed with post-traumatic stress disorder (PTSD) after their NICU stay. These statistics make it clear that it is so important that new mothers know how to access support and resources early on. These conversations should start on the maternity ward and continue throughout the NICU journey and as families transition to home. This is a quote from a respondent:

“The focus was on post partum depression or babies crying. There was no advice or leaflets regarding PTSD following birth trauma (which I had never heard of, but spent many months not realising what was wrong)”

Feedback and next steps

The responses collected from the MVP survey and focus group have been shared with the Maternity and Neonatal Wards. We have agreed actions and learning from the feedback shared with us, and to use this to inform the co-production of an online book for future NICU parents. The MVP will be able to feed back to women, birthing people and their families about responses to this feedback. The MVP intend to carry out a similar survey in a year’s time, to see if the experiences of women and birthing people have improved. Thank you to all those who have shared their feedback with us.

Final quote from a NNU parent:

“Being a NICU parent is a process of grief, terror and overwhelm, alongside all the ‘normal’ postpartum emotions. It is parenting forged in fire. Hold that in mind when you are caring for those mothers.”

Sources of support for you

If you have experienced neonatal care and feel that you need support for your mental wellbeing, please do contact your midwife, health visitor or GP.

Bliss also has lots of useful online resources – bliss.org.uk