Baby Loss Awareness Week 2021: Families share their stories

Baby loss awareness week takes place from October 9 until 15, it helps raise awareness of how pregnancy and baby loss affects thousands of families each year across the UK.

Monday, 11th October 2021, 11:43 am
Baby Maeve

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

Baby loss charity Tommy’s says that an estimated one in five pregnancies ended in miscarriage and there is around 11,000 emergency admissions for ectopic pregnancies a year.

Alexandra Tomlins, 32, lives in St Leonards. She found out she was pregnant with her second child in December 2019, but was rushed into hospital and was found to have an ectopic pregnancy and a ruptured Fallopian tube.

Gemma from Oscar's Wish Foundation

She said: “After a six to eight week recovery, I attended the cremation of my baby, who I named Robin, at Hastings Cemetery, and decided to try again for another baby.

“In early June I happily discovered I was pregnant again but unfortunately after severe pains and a scan, it was confirmed that I was having another ectopic pregnancy. This one was located on the left side again, where I had my previous tube removed. The hospital gave me an injection of Methotrexate which was supposed to dissolve the pregnancy in its early stages, but sadly this didn’t work and I woke up in agonising pain a few days later with another rupture, I named the baby Sky.

“Before this had happened to me I had heard of ectopic pregnancies but I had no real knowledge of them and certainly never thought that they would ever happen to me. I didn’t know any of the signs, and even when I was in such pain I did not realise how serious it could be.”

Alexandra set up a blog to talk about her experience: blueandpinkribbon.blogspot.comShe said: “I suffered quite a lot mentally, but dealt with a lot of this on my own. Friends were supportive but many were pregnant or with young babies and didn’t really know how best to support me, so I did struggle. I found great support in online Facebook support groups where I could talk to women going through the same thing, and this really helped me a lot, and helping others gave me a way to cope.

Hollie

“To friends and family I would ask them to please not forget or assume they are ok after time has passed- just be there for them and listen, and be sensitive when it comes to talking about pregnancies or babies.”

Shaun and Elizabeth Guy, 38, are from Petworth. The pregnancy was progressing well until 22 weeks.

Elizabeth said: “Although she was healthy sadly we discovered that my cervix had failed and dilated to 4cms with no warning or signs or symptoms, despite the best efforts of the St Richards Hospital maternity team they could not save our pregnancy and our beautiful baby Eleanor Ann was born sleeping.

“After this loss we tried again and history nearly repeated its self but our youngest son was saved by an emergency cervical stitch at 20 weeks, this confirmed that Eleanor Ann was born early due to an incompetent cervix.

Alexandra and her daughter

“Our advice to anyone going through a loss would be, to take your time, talk about your experience, seek help and support from many avenues we found a lot of support groups on social media. Also, it will never go away, you will never forget but in time you will work out a way to live with the memories.”

Sophie Cripps, 31, from Eastbourne had previously had three early miscarriages so was given an early scan at seven weeks, which showed the pregnancy was viable.

She said: “Our 12 week routine NHS dating scan went well and we were given a due date of 11/11. I came out feeling blessed. We started buying baby clothes, telling family and friends, I even bought a crib and buggy.

“At about 13 weeks I started feeling baby’s first movements. It was the most amazing feeling.

“At around 14 and a half weeks the little popping sensations stopped and I remember saying to my husband ‘something’s wrong’.”

Sophie had no pain or bleeding so after reassurances from family and friends assumed everything was ok.

The couple had a private scan booked at 16 weeks to find out the baby’s gender.

“As I lay on the bed and stared at the screen the sonographer said those words ‘I’m so sorry Sophie’, I remember my mum bursting into tears as I sat there numb. I feel like inside I already knew and the shock wasn’t there.

“We were sent home with a leaflet and told to wait for the hospital to ring. By the time I was home they had rung and called me down to the delivery unit. Once there we spent the evening being given information about the next steps and a consultant came to do another scan to confirm no heartbeat. He said our baby was measuring approximately 15 weeks as an indicator of when they passed away. I was given a tablet to take and sent home for 48 hours. 48 hours later I went back in to be induced. My waters broke at 4.15 and our beautiful baby boy Nova was born at 4.30pm.

“He was perfect…. Ten tiny fingers and ten little toes. We were allowed to spend as much time with him as we wanted. They took hand and foot prints and gave us a little box with pictures of him in and a little teddy for us and a teddy to go with him. It was all so bittersweet. I went home later that night and said goodbye to my baby boy for the last time. It felt like my heart was shattering. A week later we held a little funeral to say our goodbyes with our family and friends.”

Sophie said: “My advice to anyone going through baby loss is to take each day as it comes. Don’t blame yourself… no matter what gestation of pregnancy you lose your baby you’re still entitled to grieve. Do what you need to do to grieve and love your baby. There’s no timeline on when and how to heal. Only you can know that. Try and remember your baby with love and not pain.”

The first pregnancy of Hayley Warren, 29 from Eastbourne, was when she was 19 years old with identical twin girls.

She said: “At 17 weeks pregnant I was told my twins were suffering from a condition called twin to twin transfusion syndrome, I needed laser ablation surgery straight away to laser the twins shared placenta in half to try and save both of their lives. That was carried out at London Kings college hospital, surgery went well and both girls had heartbeats afterwards. Sadly at 19 weeks pregnant I was told that twin B, who I named Alice, no longer had a heartbeat, however I had to carry her still until I gave birth at 36 weeks. The twins were born six minutes apart in a devastating labour and Alice was buried at our local cemetery. My second pregnancy in 2016 was classed as my rainbow pregnancy, though sadly at 12 weeks I was told my son had a condition called Acrania, he was given a zero percent chance of surviving as he hadn’t developed a skull.

“I was given the choice of a medical termination or carry to full term. I chose to have a medical termination as I had already been through a pregnancy of carrying a baby that had passed and I knew I couldn’t do that again. So at 12 weeks and 6 days I went into hospital to be medically induced, it was a quick labour but heartbreaking. I named my son Junior and he was buried behind his big sister Alice.”

Hayley went on to have two miscarriages, but has since had two successful pregnancies.

Sometimes genetic tests or scans reveal that there is something wrong with the baby. Charity ARC (Antenatal Results and Choices) says that at least 5000 pregnancies are ended through a termination for medical reasons.

This is what happened to Hollie Hall and her partner Joe. The couple, from Eastbourne, found out they were pregnant in January 2020. During the 20 week scan it found there were issues with the baby’s brain.

Hollie was sent to Hastings’ Conquest Hospital for a scan with a consultant which revealed the baby girl was missing the back part of her brain, and they were sent to Kings College Hospital to its specialist fetal medicine unit.

Hollie said: “Following a month of extensive testing we were delivered the earth shattering news that our daughter abnormalities were such that she was unlikely to survive birth and would most certainly die within the first year of her life. Following advice we had to make the heartbreaking decision to end the very much wanted pregnancy. As parents we have to make the best decisions we can for our children even before they are born, and to bring a child into this world to knowingly suffer was never going to be an option.”

Their daughter Maeve was born sleeping at 24 weeks in May 2020. They were able to spend five days in the hospital before returning home, and Maeve was laid to rest in June 2020.

Jasmin Beal and Daniel Weston from Eastbourne also went through the heartbreaking decision of having to terminate a much wanted pregnancy when it was discovered at the 20 week scan that their baby had a serious heart condition, as well as problems with his other organs.

Jasmin gave birth naturally to their son Maxwell in March 2018.

She said: “He was so fragile, so small, but so perfect in every way. It really is true when they say the smallest things take up the most room in your heart.”

Jasmin’s advice to family and friends of those that have lost a baby is to also allow time for them to grieve as well.

She added: “And just tread carefully on what you might say. We had some very sad comments, and I know it wasn’t meant to be the way it sounded, but in the moment, it stabs you in the heart. For example - ‘you both are still young, you have plenty of time to try again’, ‘it obviously wasn’t meant to be’, ‘next time, it will be just perfect’, ‘it was nature’s way’. Just be there for them, offer support when you can but don’t be too overwhelming. Also, let them know you are there when they are ready to talk about their baby. We found it meant so much and it still does when our friends and family talk about Maxwell.”

For those that have lost a baby there is a number of charities out there to help such as Tommy’s, Petals and ARC.

In Sussex there is Oscar’s Wish Foundation. It was launched in February 2015 by Gemma Kybert, its aim is to give parents a platform and safe space to honour and remember their baby or babies.

She said: “We wanted to raise awareness of miscarriage, stillbirth and loss before, during or shortly after birth. Breaking the silence and shattering the stigma meant that parents felt supported in sharing their experience, working though their grief with specialist counsellors funded by us and in turn felt that some level of healing could begin to take place in time with nurturing support.”

Gemma’s son Oscar was born on November 4, 2014 102 days early due to an infection. Gemma’s waters broke at 18 weeks due to a tear in her amniotic sac.

She said: “Bedrest and monitoring full of hope that my fluids would rise and regenerate kept us going until 26 weeks when little Oscar’s heart stopped beating on the way to the hospital during labour.”

Oscar’s Wish Foundation, through University Hospital Sussex NHS Trust, offers memory boxes for families, has refurbished different hospital sites and hosts the annual Wave Of Light ceremony for families to remember their babies.

Tommy’s chief executive Jane Brewin said: “Losing a baby at any stage in pregnancy is one of the most devastating experiences that any family can go through – and it really can happen to any family, but persistent taboo means that it’s rarely discussed despite affecting so many. Baby Loss Awareness Week is an important moment for everyone to come together in remembrance and know they are not alone. Every baby lost is one too many, but this is often still just seen as ‘one of those things’. That’s why breaking the silence is a vital step in supporting bereaved parents, while our researchers keep working tirelessly to find ways of sparing others this heartbreak.”

There is no right or wrong way to grieve, and just know that you are not alone.