AM calls for more research into stillbirths and neo-natal deaths

Following a new study funded by SANDS (Stillbirth and Neo-Natal Death Charity) Siân Gwenllian AM is calling for more research into the reasons why babies continue to die before birth, as the study carried out at Great Ormond Street Hospital show that only 1 in 4 parents will get an answer to why their baby was stillborn.

Siân Gwenllian met with a mum who has experienced the devastating loss of her baby, in order to raise awareness of the support available in Arfon following baby loss, and to hear of what she thinks can be done to bring down the numbers of babies lost before birth or soon after.

Elen Hughes from Aberdaron is mum to three boys, but her three sons had another brother – Danial – who died when Elen was thirty-seven and a half weeks pregnant.

“Danial was my second pregnancy,” said Elen. “I had one little boy already – Deio – who was 4 years old at the time. My pregnancy with Danial was completely normal, and was classed as being very low risk. Every scan was fine, and the hospital staff were quite keen for me to have a homebirth. But one Friday night I just didn’t feel right – nothing major, just not feeling myself. I woke up on the Saturday morning and felt that the baby wasn’t moving as much as usual.

“I went straight to Ysbyty Gwynedd and was immediately put on a machine to monitor Danial’s heart, and everything seemed fine. I was kept on the monitor for four hours just to check that all was well, when all of a sudden the baby moved in an unusual way and the machine lost his heart beat. We thought he’d just moved too far away from the machine for his heart to be picked up, but they never found his heartbeat again….he had passed away.”

As a mother to four children Siân Gwenllian knows what it is to carry a baby hoping that everything will go as planned.

“It’s a fantastically exciting time of course,” she said, “but it’s also a time of uncertainty as you’re aware that things can go wrong but you don’t really want to think about the possibility. I can’t imagine what Elen and her family have been through, and to think that 5,000 babies a year are lost like this, it’s frightening to think how many families are affected. We really need to find out why this still happens, and that’s why I am calling for more research to try and determine the reasons, and therefore bring these numbers down.”

The weeks and months following Danial’s death were very hard for Elen, and she is very grateful to the SANDS Stillbirth and Neo-natal Death charity for supporting her during those difficult times.

“I felt lost for a long time – the post mortem showed that there was nothing wrong with Danial and no reason for his death, which made things worse in a way because I had nothing to blame and nothing to try and avoid the next time. I got in touch with SANDS and went to their meetings in Bangor every Friday, because being able to share my feelings – even the really difficult ones – was so important.”

Said Siân Gwenllian. “It’s very important that mothers and their families understand that there is support out there for them, and Elen and her family have raised over £4,000 for SANDS in order to raise awareness and thank them for everything they’ve done.”

Elen feels very strongly that pregnant women need to be aware that late miscarriages such as hers are not uncommon and that there are measures that can be taken to keep an eye on the baby’s health during these later stages.

“When we felt ready to try again for another baby I was very nervous,” said Elen, “but I used something called Count The Kicks, which is a chart, bracelet or phone app that helps you keep track of your baby’s movements. If you get to know your baby in this way then you’re more likely to notice when something isn’t quite right, meaning that you can consult you midwife or doctor to check things out.”

Her two pregnancies following Danial’s death were problem-free, Tomos and Elis are now three and one years old and big brother Deio is eight.

“I’d like the hospitals to introduce 3rd trimester scans in addition to the first and second trimester checks,” said Elen. “They have them in many countries now, but not in the UK. Mothers go through half their pregnancies without a scan, and I’m sure if there was a later scan then many babies would be saved.”

Losing a child is every parent’s worst nightmare, and it’s hardly surprising that people don’t know what to say to a friend or relative who has been unfortunate enough to go through this heart-breaking experience.

Said Siân Gwenllian, “Having spoken with Elen about some people’s reactions to her following her loss, I think the most important message I’d like to get across is that you must never be afraid of approaching a parent who has just lost a baby, and give your sympathies. People don’t know what to say so quite often they say nothing, and that can leave the grieving parent feeling more alone than ever. You don’t need to say much at all – just a squeeze of the hand is enough, but whatever you do don’t cross the street and avoid a mum or dad who has just lost their baby.”

“Nobody will ever upset me by talking about Danial,” said Elen. “I like to talk about him and hear his name. I’m still his mum, I carried him for nearly nine months, gave birth to him and held him in my arms. He will always be a part of our family, and a brother to Deio, Tomos and Elis.”

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