Pregnancy and baby

Real story: losing a twin

Emily Carlisle, 33, gave birth to twin boys prematurely at 28 weeks. One of her sons died when he was five weeks old.

"After trying for a family for years, we were overjoyed when our first attempt at IVF treatment in May 2006 resulted in a twin pregnancy. My pregnancy was normal, but when I was about 26 weeks pregnant, I felt as though I was losing fluid and I started getting tightenings. After a few days, I went to see my midwife. She checked me over and sent me straight to the hospital. 

"I was told the waters around one of the babies had broken, and I was at risk of premature labour. The babies held on until 28 weeks when, after a four-hour labour, they were born. They were immediately taken away to the NICU [neonatal intensive care unit]. I had no idea if they would live or die.

"Later that day, I went to see my babies. Joshua was on a ventilator. He wasn’t strong enough to be held, but his older brother, Alexander, was doing well and came out that first day for a cuddle.

"Over the next few weeks, we fell into a routine of visiting the SCBU (special care baby unit) several times a day. Then suddenly, Alex contracted meningitis and his condition deteriorated rapidly.

"Eventually, we were asked to make an impossible decision about our son’s future. We were told he may never breathe independently again, and that even if he did, he would never be able to walk, talk or even swallow. We chose to remove all intensive care. On December 10 2006, Alex died in his father’s arms. 

"I have no idea how we survived the next few weeks. I remember very little, apart from walking back into SCBU the day after Alex died. It took every ounce of my strength to walk past the room where we’d said goodbye to Alex, and sit by Josh’s cot. I wanted just to curl up in a ball and die, but I had another baby to care for. 

"Having another child doesn’t make it any easier to lose a baby, but it does give you a reason to keep living. I felt better after the funeral, and desperately wanted Josh home from hospital so I could have something to focus on.

"We felt very alone. After the initial flood of cards and sympathy, no one called or wrote. Even family seemed to distance themselves from us and we felt as though nobody cared.

"I wish that even if people didn’t know what to say, they’d simply sent a card to tell us they were thinking of us. I wish they’d kept doing that, long past the first few weeks of accepted mourning. Josh is three now, and I still have hard days.

"The loss of a twin is unique. When you discover you're having two babies, you join an exclusive club. When you're kicked out of that club, you grieve not only for your lost child, but for the loss of your status as a parent of twins. 

"You grieve for the lost future of your baby, for the memories you never had the chance to create, and finally you grieve on behalf of your surviving twin, for the closeness they will never know. 

"I believe you have two options when you lose someone. You can give up living and merely survive, or you can grow strong in the memory of the child you loved, and live a life to make them proud. I chose to live."

How to offer support

Judith Schott from Sands, the stillbirth and neonatal death charity, offers the following advice to help family and friends understand and support parents who have lost a twin:

  • Try to take pictures of your babies together and save mementos, such as footprints or a lock of hair. This will help when the surviving twin asks about their sibling.
  • Never assume that the live baby compensates for the loss of the second twin. The bereavement is no less than the loss of a single baby.
  • Parents need help and support at the time of their loss as they're often torn between spending time with their dead child and with a live twin who may be undergoing special care.
  • Always acknowledge the existence of the second twin, as many surviving twins can grow up to feel as if something is missing in their lives.
  • Be sympathetic to parents’ needs as it's hard to combine grieving for one baby with feeling hopeful for the surviving twin.
  • Be aware that by losing a twin, parents lose their special status as parents of twins. The future they planned around being a parent of multiples is gone, and this can be devastating.
  • Siblings also need support. They have lost the twins that they were expecting to become their new brothers or sisters, and will also have to cope with telling friends and schoolmates about their loss.

For more advice on coping with the loss of a twin, search for 'bereavement' on Tamba's website or read the booklet When a twin or triplet dies, available for £3 from the Multiple Births Foundation website.

Page last reviewed: 10/07/2012

Next review due: 10/07/2014

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