The importance of talking about miscarriage: 'The grief is individual, unique, messy'

Losing a baby at any stage is an experience many need to speak about, but don’t for societal or emotional reasons

Toby and Theo's names on this stone allow their family to take the twins with them wherever they go. 

Don’t say: “Oh, but you can always try again.” Don’t say: “At least you know you can get pregnant.” And definitely never utter the words: “Isn’t it better to lose the baby now than when they’re older?”

As women shared their stories of miscarriages and infant loss during Baby Loss Awareness Week, which runs annually from October 9 to 15, the things that well-intentioned, though misguided, friends and family members have said to them show that listening, rather than talking, is still the best way to help.

With statistics from the National Childbirth Trust in the UK putting the number of women who will suffer a miscarriage at one in four, it is one of the most common biological occurrences globally, and yet remains largely untalked about. Events such as Baby Loss Awareness Week shine a light on miscarriage, stillbirth, failed IVF and other ways a pregnancy can end.

"Shock, denial, flashbacks, anger, sadness and guilt are all emotions parents going through miscarriage can experience, not to mention grief and loss. It is a mourning process," says Dr Vassiliki Simoglou, a psychologist at Thrive Wellbeing Centre in Dubai. "The moment a couple discover they are expecting, they are invested. They attach dreams and hopes to the baby, so miscarriage is a devastating experience no matter the stage at which it happens. There is trauma, because the shock is never expected."

'They tried to take him away'

After a 26-hour labour, twin boys Toby and Theo entered the world at 8.33pm and 8.45pm respectively in August 2018, to Abu Dhabi parents Sarah and Andrew. "My waters broke at 20 weeks and three days," says Sarah, 33, a teacher. "At 18 weeks, I went to the hospital where I was put on complete bed rest, staying horizontal the entire time, but they couldn't stop the premature labour. The doctors said it was unlikely they could save Toby, but that if I delivered him and the placenta, there was a possibility to save Theo.

“Toby was still alive, and we were in awe of him,” she says of the birth. “The doctor then said the second one was coming, and at 8.45pm, Theo joined us, too. I had them both on my chest for a while. Around 9.30pm, their hearts stopped while I was still holding them. They were born 12 minutes apart and died within moments of one another.”

Arriving at 20 weeks, Toby and Theo's births are termed a late miscarriage, as opposed to an early miscarriage, which occurs up to 12 weeks, and a stillbirth, which occurs after 24 weeks. Dr Sura Alwan, from the specialist obstetrics and gynaecology department at Medcare Women and Children Hospital, says 80 per cent of all miscarriages are early. "Most cases cannot be explained and we cannot always know the cause. However, the most likely are genetic chromosomal abnormalities, infection, autoimmune diseases or medical issues such as diabetes or thyroid."

Physiology aside, societal and emotional taboos around baby and infant loss meant that in Sarah’s experience, those in the delivery room seemed unsure of how to handle the situation. “They scooped Toby up, and they tried to take him away,” she says. “I said: ‘Is that my baby? I’d like to hold him please’, and they put him back on my chest.

“I remember feeling that the nurses and doctor hadn’t come across a couple who wanted to see their children. I felt the question should have been asked. But once I told them I wanted to hold them, they were very sympathetic and understanding.”

‘The grief is individual, unique … messy’

“We are only just dipping a toe in the water as to what we’re doing in this region,” says Lala Langtry White, a doula who offers bereavement support to families. “I would like to see hospitals place greater value on the choice they offer when it comes to bereavement support. From early on at IVF and ob-gyn clinics to the hospital, it should be recognised at all stages.”

Calling the loss a "unique and individual experience", Ottilia Brown, a clinical psychologist who runs the Little Lifetimes Support Group for Pregnancy and Infant Loss at The LightHouse Arabia, recommends parents speak about their experiences as a way of making sense of their grief.

“Grief is individual, it’s messy, it can come in waves and be confusing and overwhelming,” she says. “Talking to someone whether a friend, therapist, spouse or support group can facilitate the processing of emotions and help them make sense.”

Sarah, who is also mother to eight-month-old Hugo, says what helped her make sense of the loss of Toby and Theo was starting her blog.

“It was very shocking, the worst thing I’ve ever been through, but writing about it helped,” she says. “I used it as therapy. Just for me to type it out was getting it out of my mind. I was trying to educate others to give them the information they needed to support us.”

‘This baby is always with me’

Susan Rofe, 43, a stay-at-home mum from Dubai who has experienced three miscarriages, recalls the “bittersweet” experience with her third, which occurred following her seventh round of IVF.

“We had five embryos and picked two to use, and had decided this was the last batch to work with,” says Rofe, mother to three-month-old Klara. “We were elated when they both took, but unfortunately one of the babies didn’t thrive and we lost it. It was such a bittersweet moment because we were so happy that one was doing well and thriving, but we also had to process the loss of the other.

“I remember being at work and thinking of the other baby and dissolving into tears. It was a strange feeling to be so happy yet devastated at the same time.

“What really helped was something my hypnotherapist said, which was that maybe I could look at it as the baby will be absorbed back into my body, so it’ll always be with me. In this way, I didn’t count it as a loss, because I’m still carrying that baby.”

'Without the photos, I don't know where I would be'

Sarah Hall lost her son, Frank, at 34 weeks in a stillbirth that left her and her husband, Dave, “lost”. Speaking candidly about the birth in January 2018, the mother-of-four from Dubai reveals her doctor’s knowledge of Langtry White and the bereavement service she provides helped the Halls create memories in the moment they can treasure for ever.

“My doctor called Lala straight away,” she says. “I didn’t know what she did or who she was. I just said ‘I don’t know what I need right now’, and she was invaluable to us that day.

“Things like planning the funeral and repatriation ... we were just lost because we weren’t preparing for a death; it just happened so suddenly.

“When it came to dressing Frank or putting a nappy on him, I was thinking: ‘Is this normal? Am I being disrespectful?’ And then I look back, and it was so nice to dress him and make those memories. Lala took away all those doubts.”

“We created a memory box, and we got a lock of his hair. When it came to photos, I thought: ‘Should I take them?’ And the photographer came in and was discreet and non-intrusive, and took photos of us holding him. Without them, I don’t know where I would be now.”

Without access to a temperature-controlled Cuddle Cot, which buys parents some more time with their stillborn children, Sarah only had six hours with Frank. The little boy’s legacy includes a Cuddle Cot donated to Mediclinic City Hospital in his name, along with Dubai support community Small and Mighty Babies.

“A photograph of your baby, even if you don’t feel able to ever look at it again, is better to have than regret not having,” says Langtry White.

Regret remains a common thread pulling these losses together. “My husband was scared to hold Toby and Theo,” says Sarah. “He felt completely helpless watching me going through labour and the emotional pain of seeing the children. And he wishes he had held them while they were alive.”

It’s a sentiment with which Langtry White agrees: “One more cuddle,” she says, “will never be enough.”

Simoglou adds: “Give space to the sorrow to be expressed, don’t silence it. Acknowledge the loss, don’t minimise it and don’t let anyone else minimise it. Talk about it as frequently as you feel the need to. And, as a listener, never try to change the subject ... be there for as long the parents need.”