Grieving parents keep memory of tragic twins alive by 'always talking about them'
Alice McKenna lost both her babies to a rare complication
A mum-to-be whose baby girl tragically died in the womb faced heartbreak a second time as she was forced to terminate her seriously ill twin. Alice McKenna was 25 weeks pregnant with the twins, Zara and Matilda, when she learned one of them had passed away due to a rare, undetected condition.
Alice, 32, and partner Adam, 33, discovered they were expecting their first child in April 2022. After Alice experienced a sudden, unexpected bleed, she went for a private scan and was given the news that she was having not one baby, but twins.
She said: “At one of our scans, they said to us that twin two was always sucking her thumb. Then at the 19-week scan, they realised twin two couldn’t move her arms and legs. She was diagnosed with arthrogryposis. The doctors said to us at the time as they were identical twins, the other twin will probably develop it. They said there was something wrong with her stomach."
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Arthrogryposis, which describes a number of conditions affecting the joints, is a rare disorder occurring in 1 out of every 3,000 live births. Alice was given the option of terminating her pregnancy, but she decided to first undergo a double amniocentesis test to check if the babies had any genetic conditions.
When Alice experienced reduced movements with one of the twins, she went to hospital. She said: “The midwife didn’t scan me but listened to the heartbeats. She said there were two heartbeats and it was fine.
"I went back to foetal medicine for a planned meeting. I asked to be scanned but they said I was being scanned too much. I went back for a scan a week or two later and twin one, who was our healthy twin, had passed away.”
Unknown to anyone, Zara and Matilda had been suffering from twin-to-twin transfusion syndrome, a complication of identical twin pregnancy which causes unequal blood supply between the two foetuses. This resulted in Zara taking up 70% of the placenta, while Matilda, the healthy twin, had just 30%.
Following Matilda's tragic death, Alice and Adam made the decision to terminate the pregnancy, as there was a high chance the remaining twin would be severely brain damaged as well as having arthrogryposis.
Alice, from Mossley Hill, said: “When I gave birth it was quite clear twin one had passed away when I went in for that earlier scan, she had passed away at around 23 weeks. When we got the results of the post-mortems, we discovered that Matilda had passed away due to acute Twin-to-Twin Transfusion Syndrome and sIUGR (Selective intrauterine growth restriction). This had not been picked up on in previous scans due to the nature of acute TTTS often being unforeseen."
Following the death of her twins, Alice discovered Twins Trust’s Bereavement Service and found other parents who had faced a similar situation. She said: “I contacted Twins Trust’s Bereavement Service to have the girls’ names put on the webpage with other babies who had passed away. It made me realise I wasn’t alone. I follow the Bereavement Service Instagram page and it really helps me and gives me comfort knowing that we aren’t the only parents who have lost two babies at the same time.
“You find comfort in hearing other people’s stories and knowing you aren’t on your own. We talk about Zara and Matilda all the time – we never stop talking about them. We mention them to people I don’t know and love seeing their names written in places. We love them and they are still our babies, but they are not here for us to look after.
"Sharing their story and potentially helping other families is their little legacy. We keep them alive by talking about them. Lots of people will hear their names and know their story and know that they lived – and that’s so important to us. They did live inside me for 25 weeks and five days, and their legacy will carry on with us for the rest of our lives.”
Louise Bowman, Head of Family Services at Twins Trust, said: “Baby Loss Awareness Week is an important week that gives bereaved families a chance to have their voices heard and share their stories. At Twins Trust Bereavement Service, we offer a lifeline to parents and families coping with the unique challenges of loss from a multiple birth. We are here to support them through their bereavement journey and help them feel less alone.”
For bereavement support go to https://twinstrust.org/bereavement.html
