Baby Loss Awareness Week: Mum shares story of premature twin loss and help received by Medway-based charity Abigail’s Footsteps
05:00, 09 October 2024
updated: 11:08, 09 October 2024
A mum who lost one of her twin boys due to a rare complication during pregnancy has told of her grief and guilt as she expects another set of twin boys.
Emily Cooke has shared her story in the second podcast series of A Journey with Abigail’s Footsteps to mark the start of this year’s Baby Loss Awareness Week.
In 2022, Emily prematurely gave birth to identical twin boys, Fletcher and Harrison, at 27 weeks. Sadly, Harrison was stillborn.
She said: “At the start of my pregnancy, we were shocked to find out we were having twins then we found out they were identical twin boys. We were very excited and everything looked OK.”
However, when Emily was 21 weeks pregnant she was diagnosed with Twin to Twin Transfusion Syndrome (TTTS) after a scan picked up her babies were different sizes and had different levels of amniotic fluid.
It meant there was an abnormal connection between the babies’ blood vessels meaning blood was being transferred from one twin to the other.
TTTS is rare and occurs in around 10 to 15% of pregnancies with twins who are monochorionic, meaning they share a placenta.
In Emily’s pregnancy, Harrison had more blood and fluid meaning he was a lot bigger than Fletcher, however, this meant Harrison was the most unwell.
Following the diagnosis, the 31-year-old was referred to a hospital in London and had a procedure known as Laser Ablation which has a 75% chance of taking home one or both babies.
It uses a laser beam to seal off some blood vessels in the placenta so both babies receive a more equal supply of blood.
The surgery did not work and a week later Emily underwent treatment again and Fletcher was given a blood transfusion.
At 24 weeks, she was told by the doctors the second procedure had not been successful and there was nothing else they could do for her.
She said: “I will always remember that car journey home. I knew the doctors were really honest with us about how poorly Harrison was and we thought he might die.
“Two days later we went back for a scan and they confirmed he had passed away.
“It was such a strange day because they said Fletcher was doing really well and was no longer fighting for more of the placenta.
“It was a real bittersweet day. I think lots of twin parents who have had TTTS will feel that guilt - the relief that Fletcher was okay but the heartbreak that Harrison had passed away.
“I did not enjoy the rest of my pregnancy, I am not going to sugarcoat it. I hated it and I was so anxious every day.”
At 27 weeks, Emily gave birth to Fletcher, now two-years-old, who only weighed 830 grams and Harrison who was stillborn.
The mum added: “When you are a twin parent and there are two babies on the scan you imagine your life with two babies.
“You are a mum to two babies and always will be but when you do not take two babies home it is a lot to process.
“I still feel like a twin mum and I still talk about him. He is our son, we have two children…”
“I still feel like a twin mum and I still talk about him. He is our son, we have two children.
“Baby loss still creeps into every aspect of your life. When Fletcher came home, I was more anxious about him dying.
“I wanted him to be OK because our reality was one of our sons had died.”
Following the death of Harrison, Emily received free counselling from Medway-based child bereavement charity Abigail’s Footsteps which she has continued using two years later as she expects two more identical twin boys.
She added: “It has been a completely different pregnancy. There have been no complications and I have had amazing support from Abigail’s Footsteps.
“Until I fell pregnant again with identical twins, I do not think I realised how rare TTTS is. For me that was my whole life, that was my journey and what happened to my twins.”
To mark this year’s Baby Loss Awareness Week, the charity has launched its second podcast series A Journey With Abigail’s Footsteps to help other parents.
Jo and David Ward set up the charity Abigail’s Footsteps in 2010 following the death of their daughter at Medway Maritime Hospital at 41 weeks gestation.
At the time, they could only spend a couple of hours with their baby and were put in a room where they could hear other newborns crying.
The charity aimed to make sure no other parents experiencing the loss of a baby went through the same thing and now offers counselling, bereavement suites and cold cots to hospitals and specialist training for healthcare professionals.
Sharing her story in the second series of the podcast, Jo said: “It gave me the strength to keep going. If I had not had that reason to carry on I do not know if I would have done.
“I had to do it in Abigail’s memory and to do something to make her proud, that was the driving force behind the charity. We could not forget her.
“At the start, we just wanted to raise a little bit of money. There were never any big plans, we just wanted to give something back to the community and avoid another person going through what we did.
“It is strange looking back on how the charity has evolved. We are extremely proud.”
Counsellor at Abigail’s Footsteps for three years, Jenny Bradshaw added: “I think the subject of baby loss although talked about far more than it was is still taboo.
“British people find talking about death and loss really uncomfortable and we get it wrong sometimes so giving people a space to talk about their baby is really valuable for people who want it.
“Not everyone is ready to have those conversations but for those who want it, the feedback is overwhelmingly positive.”
In the UK, it is estimated that one in four pregnancies ends in the loss of a baby.
A Journey with Abigail’s Footsteps is an IM Listening production.