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Supporting families through pregnancy loss and baby loss

26 April 2023 - For the majority of people, pregnancy results in the birth of a healthy baby, but sadly, some families do not get the happy outcome they expected. 

In the UK, it is estimated that one in four pregnancies end in baby loss during pregnancy, or birth.

One King’s patient who knows only too well the experience of pregnancy loss is 41-year-old Tulip, from south London. “Although I came to it relatively late in life, I’d always hoped to have children”, she said.

Tulip’s first pregnancy was straight-forward, and she gave birth to a baby boy at King’s College Hospital in 2018, but in 2019, she experienced two early miscarriages. “I always knew there was a possibility of miscarriage, but until it happened to us my husband and I never talked about it,” Tulip said.

“The second miscarriage was particularly difficult as I was overseas for work where I was reporting on maternal health in a refugee camp for BBC News. I felt extremely fortunate to be able to return home to the UK and have such good care at King’s,” she added.

In 2020, Tulip became pregnant again and reached the 12-week milestone many people consider the safer period of pregnancy, as the foetus is fully formed. At 20 weeks, after she hadn’t felt her baby move, Tulip decided to get checked – something everyone expecting a baby is advised to do if they detect a reduction in movement – and she came to King’s for monitoring.

“I hadn’t felt movement with my first son until later in the pregnancy, so I wasn’t worried there’d be a problem,” she said. “I remember being scanned and the sonographer didn’t say anything. Instead, she called in a colleague for a second opinion. ‘I’m so sorry,’ one of them said.”

Tulip was told that her baby didn’t have a heartbeat, and that she had experienced a late miscarriage. She was supported and given a pack of information about what would happen next. Babies born without a heartbeat after 24 weeks are described as being stillborn, and babies born before that are classified as a miscarriage.

Second trimester losses (under 24 weeks) are rare, and affect around one in 100 pregnancies. Following the devastating news, Tulip was given medication to start her labour, and was told that a bereavement midwife would be in touch to talk her through the birth of her baby. When she arrived at King’s to deliver her baby, Tulip was given a laminated piece of card. “It had a butterfly on it so that I didn’t have to explain what had happened when I went to the ward. I was given a private room, and never saw any other pregnant women, which I appreciated,” she said.

“The actual delivery, to my utter surprise, was beautiful. It was the one thing we were able to do together”, she added. After Tulip’s son Rivah was born, she was wanted to see him and spend time with him but her husband found it too difficult. “The midwifery team was very good at managing that,” she said. “They brought him in to me at appropriate times when I husband stepped outside.”

“Initially, I was scared and didn’t know what to do or how to be with the baby. Should I touch him? Should I stay in hospital with him or go home?” she said. “I had a conversation with one of the midwives. She clearly sensed that I wanted to stay and said ‘if you want to stay, then perhaps you should – there’s no rush for you to leave’. She helped me navigate what to do and in hindsight this was completely the right thing – it made the situation real and helped me accept what had happened, Tulip said.

King’s has cool cots for babies like Rivah so they can spend extended periods of time with family members following birth. After a very difficult night in hospital when Tulip said at times she felt scared to look at her baby son and wasn’t sure if and how to hold him because he was so small and delicate, the midwife came in and changed his clothes. “It was so beautiful, she treated him with such care, like any other baby. It was then I felt more comfortable about holding him,” she said.

Talking about the support provided by the midwifery team and the bereavement midwife, Tulip said, “They were kind, lovely and very intuitive – and I was grateful for that.” After Tulip left hospital, Edyta, the bereavement midwife, kept in touch by phone: “She was a lifeline – I spent an hour on the phone to her one night. She was one of the few people I felt I could talk to,” Tulip recalls.

Tulip began feeling guilty about leaving Rivah in the hospital and going home, and for not taking enough photos with him so Edyta arranged for Tulip to come back to the hospital. When she arrived, Edyta had Rivah dressed and prepared so Tulip could spend more time with him. “She put together the baby basket beautifully and gave me the time that I needed. I really appreciated that, it made such a difference,” Tulip added.

One in 100 women experience recurrent miscarriage, which is defined in the UK as three miscarriages in a row. Sadly, Tulip experienced another baby loss in early 2021. After becoming pregnant again in autumn 2020, she was understandably anxious. “When I was pregnant soon after losing Rivah, Sarah (another bereavement midwife at King’s) became such an important part of my journey. She arranged additional psychological support when I was struggling to cope, and came with me to some of my scans. At one of these scans, at 16 weeks, I was told that I had lost another baby boy. Sarah held my hand, and sat with me on the floor of one of the rooms as I lost the feeling in my legs. She also broke the news to my husband over the phone – when I couldn’t bear to do it,” said Tulip.

Before and after baby Rae was born Sarah stayed in touch and spent time talking to Tulip, explaining what would happen and providing information and support. “She said to me, ‘I’m here, call me whenever’ and she was practical, as well as kind in her advice, which is what I needed,” Tulip recalls. Rae’s birth was complex, but Tulip recalls a midwife called Abbie who helped her get through it. “She was looking into my eyes telling me to push and in that moment it felt like she was the only person in the room. The way she cared for me was incredible. I will always remember her and how she literally saved my life that day after I suddenly started losing a lot of blood.”

Following Rae’s birth, Tulip was referred to a specialist clinic for tests. “I have never got answers as to why I lost my two baby boys, it was likely to do with problems with the placentas. But in the aftermath of losing Rae, Sarah helped me gather all my previous test results and pregnancy notes to take to the recurrent miscarriage research centre at St Mary’s, and also helped arrange appointments with clinicians involved in my care at King’s.”

Around half of pregnancy losses are attributed to known causes, such as problems with clotting or the lining of the womb but for many families, the reasons remain unknown.

Sarah supported both Tulip and her husband with phone calls to them both. “She called us for months afterwards – it made such a difference”, Tulip added.

After the heartache of four losses, Tulip and her husband did go on to have a healthy pregnancy and their daughter was born in the summer of 2022. Sarah met the new addition and continues to hold a special place in the lives of Tulip and her husband.

Tulip added, “I wrote to the hospital to say thank you for the support I received before, during and after the deaths of my two babies. I knew very little about the world of baby loss back then, and the help, guidance and kind ear that was provided has made navigating this difficult journey more bearable.

“I had never heard of the role of a bereavement midwife until I lost Rivah but I am so grateful for this crucial service. I am inspired by and so thankful for the work Sarah and her small team do day in, day out. It has made such a difference to me. Sarah went above and beyond to ensure we always felt we could get in touch, and that we were not alone – at a time when we felt very isolated.”

Sarah Phillips, who cared for Tulip and her family, has been at King’s for 19 years and worked as a bereavement midwife for the last five and a half years. Explaining the reasons for her chosen role, Sarah said, “Throughout my career, I have gravitated towards working with patients when they are vulnerable and need enhanced levels of support. The help and care provided during the toughest of times can have the biggest impact on people’s lives.

“In my role, I enable families to spend time with their babies, bathing and dressing them, taking photos, and creating precious memories. I also help with organising clinical investigations, debriefs for families, funeral arrangements, acknowledging anniversaries, and signposting to support organisations and psychological therapies. I also work with bereaved families during subsequent pregnancies and the birth of those babies.

“I really enjoy getting to know families well and I get enormous satisfaction in helping them through their grief and seeing the transformation. It amazes me just how strong human beings can be.

“Tulip has been very brave in sharing her experiences, and through her work she has helped raise awareness of the important topic of baby loss.”

After Tulip’s losses, she went on to make a documentary for BBC News about miscarriage care around the world – you can watch now on BBC iPlayer.

Sarah has launched a Just Giving page to raise vital funds for the service. Money raised will help to furnish a new bereavement suite – a dedicated area for families experiencing baby loss with a less clinical, more homely feel – including a double bed, duvets and bed linen, kettle, crockery and cutlery as well as enhanced training for colleagues across the hospital and books about baby loss for affected families. Longer term, Sarah hopes to develop support groups and art therapy groups for bereaved families.