Monday 3 December 2018 was a day Sam Boatwright had looked forward to for so long.
It was the due date of her first child – a girl called Emmy Rose.
But instead of seeing her for the first time that day, Sam went to register both her birth and her death.
Emmy had died three days earlier at three weeks and two days old.
She had severe ventriculomegaly, meaning enlargement of the ventricles, and agenesis of the corpus callosum, meaning the white matter between the two hemispheres of the brain did not develop properly.
Although she had been kept alive by a ventilator and then breathed on her own for three days, the birth defects were too severe for Emmy.
Plunged into unimaginable grief, Sam cut herself off, struggling to speak to people who didn’t understand.
Sam found out she was pregnant in March last year after a whirlwind romance.
She met Emmy’s dad Si just a month after she came back from 20 months of travelling.
A month later, they were dating and then five months later, in March, they found out they were going to have a baby.
Although they were shocked, they couldn’t wait to meet their little one.
‘Everything moved quickly but there was no question of whether I was going to keep the baby though,’ Sam says.
‘I told him and we were both excited. I have wanted to be a mum since I was 21 or 22. I came out a relationship when I was 25 and then went travelling so it was always there but had been on hold a bit.’
But at an early six week scan, they were told that there was only a 50% chance their baby would reach 13 weeks.
Sam adds: ‘We were worried but we were giving her a chance. I had this feeling that it was a girl and I just couldn’t wait to be her mum.’
At 12 weeks, they were told that there was a possibility that Emmy would be disabled but Sam was sure that they would cope with whatever happened.
She explains: ‘I was offered a termination but that just wasn’t an option for me. She was my little girl.’
Sadly, as her pregnancy went on, the news from her medical team got worse, with Emmy showed signs that she wasn’t developing properly.
‘We just tried to say it would be ok,’ Sam says. ‘We were trying to be positive. There were lots of tears and I don’t think I had a happy week throughout the pregnancy.
‘I had 37 scans in 37 weeks. It was just weekly bad news and they did keep advising me to terminate but I just wanted to give her a chance.
‘If they had told me that there was 100% no way she could breathe, I would have thought about it but they said they didn’t know for sure how she would be other than poorly.
‘I went online and added lots of groups. I spoke to other women who said that their children had been diagnosed with similar conditions and it had been ok. I just wanted to wait and see.’
At 33 weeks, a foetal MRI scan showed that Emmy was going to be severely disabled.
‘Every scan we hoped that it would stay the same but she was getting worse. We had the foetal MRI and they sat us down with a baby specialist and they explained that she might have problems breathing, hearing, seeing etc.
‘It was 33 weeks and they again offered me a termination but still did not want that. I could feel her kicking inside me,’ Sam says.
Sam went into labour at 36 weeks and three days, and despite her difficult pregnancy, she couldn’t wait to meet her little girl.
Sam says: ‘It was a really difficult labour. I had an epidural and I was pushing but she wasn’t moving because she was disabled so she wasn’t going down the birth canal.
‘They decided they were going to have to use forceps to get her out. I was laid there and then suddenly Emmy was out but I didn’t hear anything. I was waiting for her to cry.
‘There were about 30 doctors in the room and everyone was crying. Si was crying. He went to take a picture and see her and they were incubating her because she couldn’t breathe by herself. As soon as they cut the cord, she couldn’t breathe.
‘They brought her back and took her straight to neonatal intensive care but we knew that she was really poorly.’
That evening, after both Emmy and Sam were stablisied, Sam got to see her baby for the first time – but Emmy’s condition meant she wasn’t able to even touch her baby in the incubator.
She says: ‘The minute I walked in there, I just knew that everything wasn’t going to be ok.
‘All the babies have one-on-one care, which is amazing but at the same time, I thought about how sick is my baby was to need that. She was in an incubator and she just looked so poorly but she was beautiful.’
Emmy was wrapped in cooling blanket for 72 hours to try to give her brain time to recover from being starved of oxygen at birth.
Sam says: ‘It was just so horrible to see. I couldn’t hold her or even put my hand in the incubator because it affects the temperature. All I could do was watch.
‘This was my firstborn, beautiful daughter and that was all I could do. I was crying and crying. I was so exhausted. I fell asleep crying that night and woke up in the middle of the night because my milk was coming in.’
As time went on, doctors told Sam and Si that sadly, Emmy wasn’t going to be able to survive for long without the ventilator.
Knowing that their time with her was precious, they spent every hour they could at the hospital with her.
Sam says: ‘On day 10, an MRI scan showed that it really wasn’t looking good and all they could offer was palliative care. They told us we could go to a hospice as our family would be able to visit here there.
‘Emmy was struggling and she was having seizures. It was hell. We felt like it was time to say goodbye.’
Just before reaching three weeks old, Emmy’s ventilator was removed but amazingly, she was able to breathe by herself.
‘It was incredible and the doctors just couldn’t believe it,’ Sam says. ‘We knew she wouldn’t be able to breathe for long so we wanted to enjoy every moment.
‘We were able to spend three days with her, just holding her. She hadn’t opened her eyes the whole time and then she did in those last few days. It was like she was saying “Hi mummy and daddy. I am trying to be strong for you.”
‘We didn’t go home for three days and we just took it in turns holding her because we didn’t know she was going to go.
‘She was getting weaker and weaker and her breathe was getting shallow. Her heart rate was slowing down. She couldn’t swallow and would start choking on her saliva so they would come and do suction.
‘We had 10 people in the room on the Thursday morning and we were going to take her to the hospice so she could meet her older sisters. They couldn’t come to the NICU because kids carry so many infections.
‘On the Thursday she stopped breathing and they managed to bring her round again but on Thursday night she kept being sick and she couldn’t take the medicine.
‘Her body was just shutting down basically. It was horrible to see and so heartbreaking. We spent all the time with her and I was saying: “You’re so brave but you can go and be an angel now, Emmy. We love you and we always will.”
‘We were just lying with her all night and just crying . She passed away so peacefully, she was laid on the pillow next to me and we were playing some soft music.
‘She was breathing really really softly every 10 seconds. It was getting less and less. We were just watching her and then she went still and the doctor came in and said she was gone.’
After she passed away, Sam and Si bathed her and dressed her and they were able to take some hand and footprints, as she was placed in a cooling cot to preserve her.
In the weeks that followed Emmy’s death, Sam admits that everything was incredibly difficult.
Organisations to support people who have lost a baby
You can contact SANDS – the stillbirth and neonatal death charity through their helpline 0808 164 3332 or by emailing [email protected]
Bliss, the special care baby charity support parents of premature or sick babies. You can contact 0808 801 0322 or email [email protected]
The Lullaby Trust provides support for bereaved families, raises awarness of Sudden Infant Death Syndrome (SIDS) and promotes adivce on safer abby sleep. There is a free information line for parents and professionals on 0808 802 6869 and a dedicated line for bereaved families 0808 802 6868. You can also email [email protected]
The Miscarriage Association helps those who are affected by miscarriage, ectopic pregnancy or molar pregnancy. For support call 01924 200 799 or email [email protected]
She says: ‘The first few weeks were really dark. Her funeral was December 18, so a week before Christmas. I usually love that time of year but I just didn’t want anything.
‘I introverted into my grief and didn’t want to see anyone at all. I felt nervous and embarrassed. I was scared to see my closest friends. I think I closed myself off because I just didn’t see how they could understand,’ she says.
Looking for some support, Sam turned to Instagram, where she found a whole community of people who have experienced baby loss.
She explains: ‘I found friends through Instagram. At first I thought ‘Are you serious? I’m finding comfort for the death of my baby through a hashtag like #babyloss’ but I felt so lost.
‘I got a puppy a few weeks after she died to help and I couldn’t go to support groups because I didn’t want to leave her so Instagram became my online support group.
‘I was overwhelmed by the whole world of mums and families who have lost their babies. I couldn’t believe it. I started posting pictures of Emmy and people starting connecting and talking to me about how they understand.
‘One of the things that made a difference is that that community of people would say your baby is beautiful, rather than was beautiful. That is a big thing for parents who have lost a baby.
‘They might not still be alive but their memory is still alive. Speaking about them in the present is important.’
After meeting her new online friends, Sam created the Angel Mama meetup, for bereaved mums to meet together in different parts of the UK.
She says: ‘There are support groups out there and they are fantastic but I decided to set up something a bit more informal for mums who have lost children.
‘I set up the angel mama meet up and before I knew it, I had 30 mums wanting to come. We have one in Manchester too.
‘I’m putting together gifts and things for everyone and I just want it to be a really special day for everyone.’
And the people she met online have also inspired her to created the Little Angel Mama collection.
The range features t-shirts, tops and jumpers with different slogans to represent people who have lost children.
The Emmy is a navy jumper with pink stitching that says ‘My angel made me a mama’, a design that is also available in blue writing (The Percy) or a white stripy top (The Carrie).
The Layla is a white stripy top with gold lettering that says ‘Mama to an Angel’.
Sam hopes to create versions for mums who have lost twins, as well as a full range for dads and grandparents in the coming months. She’s also thinking about creating bags and accessories in the future.
She adds: ‘I just want to get people talking about baby loss. I’ve chosen the names of the pieces in memory of babies I have heard about along the way. The mums I have met love it when you say their baby’s name.
‘They’ve all been so supportive of the Little Angel Mama Collection and I have had such a positive response.’
Working on the meetup and the collection have helped to give Sam something positive to focus on and a way to remember Emmy.
She adds: ‘I still have bad days where I can’t do anything and some days are a little bit lighter but it is always there. It weighs heavily but the community have helped so much.
‘There are so many people out there who have said they have lost a baby and so many more who don’t talk about it. For me, talking about it and talking about Emmy every day has been so important and I just want to do what I can to open up that conversation.’
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