'We were told our unborn daughter had less than 10% chance of surviving'

'We were told our unborn daughter had a less than 10% chance of surviving'. A couple has recounted their harrowing experience when their first child was born.

Bethan Wyn Evans and Carwyn Glyn Evans, both aged 35 from Llangynnwr in Carmarthen, faced the heart-wrenching reality of not being able to cradle their newborn, Mari Glyn, until she was five weeks old.

The couple was confronted with the grim prognosis that their daughter had less than a 10% chance of survival. In an interview with WalesOnline, Bethan and Carwyn detailed how Mari underwent treatment across three different hospitals during her illness.

Now, the grateful parents are eager to give back to those who provided such compassionate care. Bethan, who works as a Welsh-medium education manager at the University of Wales Trinity St David's, encountered complications at 28 weeks into her pregnancy in November 2021, while expecting the couple's firstborn.

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"We had completely normal 12 and 20 week scans," Bethan recalled. "Everything was going completely fine, and then at 26 weeks pregnant, I had a high level of sugar in my urine so they sent me for a test.

"They diagnosed me on the borderline of gestational diabetes, which actually didn't turn out to be anything in regards to what happened to us later, but what it did mean was that we had an extra scan at 28 weeks. A scan we wouldn't normally have had.

"During the scan at Glangwili, they found fluid around [Mari's] head, down her back, and down her belly. It was very serious. It was in 2021 and in the midst of the Covid period as well, so Carwyn wasn't allowed in with me. I was on my own at that point, but when they saw that, they said: 'Where's your husband? Call him, bring him in'. That's how serious it was".

Bethan shared that a consultant from the Carmarthenshire hospital informed them they could not provide a diagnosis. The couple were then referred to the fetal medicine unit at the University Hospital of Wales in Cardiff. They faced an arduous series of tests and scans the following day.

By week's end, Bethan and Carwyn received the gut-wrenching news that their unborn daughter had congenital chylothorax - a rare and potentially fatal neonatal condition. This condition involves the leak of lymphatic fluid into the space amidst lungs and chest wall. Accumulated fluid can trigger severe coughs, chest pain, and even impeded breathing.

In tiny Mari's case, maldevelopment of her lymphatic duct resulted in lymphatic fluid migrating to inappropriate parts of her body. Bethan said: "They basically told us that there was less than 10% survival at that point. It was devastating, but there was a chance and we were massively clinging on to that."

This brave family was then directed to St Michael's Hospital in Bristol, where their baby had a drain implanted in her lung while still in the womb. They spent that period with relatives in Newport, remaining close to Bristol.

Despite successfully draining one lung, Bethan and Carwyn were informed there was still a substantial accumulation of fluid within the baby's body, resulting in them being sent back to Bristol for another run at draining liquid from the second lung.

Rolling into December, Bethan was already 31 weeks on her journey to motherhood. Following the second fluid drain however, she felt unwell and was recommended to stay overnight for observation. "The next day, I had experienced quite severely reduced movement," she said. "I couldn't feel her kick as I usually would and unfortunately, I think her condition had deteriorated at that point. They decided that she would be better off out than in".

Little Mari Glyn entered the world prematurely at 31 weeks, coincidentally sharing the same birthday as her father, Carwyn, on December 22. Her birth weight was officially recorded as three pounds and 10 ounces, yet due to considerable fluid swelling, doctors presumed she was considerably smaller - estimating around a pound and a half.

Bethan conveyed that the spell after Mari's birth was an arduous time for the entire family. "We were taken down to the theatre, Carwyn was able to stay with me throughout and they explained what they were going to do," Bethan said. "It was completely scary, but they were so calm with us."

She continued: "As she had fluid in her lungs, I knew she wouldn't cry when she would come out. She was taken away straight away and we were behind the screen for quite a while as they were working on her.

"The staff were talking to us so calmly and reassuringly. They had to do a resuscitation and take the old drain outs and the new chest drains in to drain the fluid. They rolled her past us then in an incubator. That was the first time we saw her - two metres away in an incubator. She was then taken away overnight to be worked on and to save her life."

Bethan went on to say: "They moved us into a room on the ward, where I was able to recover. We were three hours away from home and it was around two or three days before Christmas. During the early hours of the morning, Carwyn got to see Mari properly and touch her little hand. For the latest health news, sign up to our newsletter here."

"She was in a critical condition - she was stable but it was very serious. She was on a ventilator, she had the chest drains in and obviously very sedated to manage the condition she was in. A consultant came down to have a chat with both of us about her condition. They told us that her condition was so serious that they recommended that we make our memories now. It was really difficult."

"They basically said that with this condition, the lymphatic duct would either close itself or wouldn't - she was either going to make it or she wasn't, and they couldn't tell us either way. We were just hoping that it would close, but we started having discussions about palliative care and so on. We had to have those really difficult discussions in case the worst would happen."

But Carwyn and Bethan remained hopeful that their little girl would recover. For the weeks that followed, Mari's condition remained critical, and at five weeks old Bethan was able to hold her daughter for the first time in January.

"Because she was ventilated and with the chest drains she was too fragile to be moved at all," Bethan explained. "But when she turned five weeks, they told us that they thought they could move all these wires and let us have our first cwtch. She was able to come into my arms, while still on the ventilator, and we were able to have our first cwtch, which was incredible. You never imagine having a baby and not being able to hold them, so having that first cwtch was just incredible."

A week and a half later, things started to change for Mari and for the better. "At around six and a half weeks old, she just clicked," Bethan said. "The lymphatic duct had closed, the fluid in the drains had stopped, she started to shrink because she was very swollen from the extra fluid."

"She started to look like a newborn baby and she was really getting better, it was fantastic. One consultant came to our ward one day and said: 'Right then, we are going to get you back to Wales'. We couldn't believe it."

From there, Mari was transferred to Singleton Hospital in Swansea, where she spent two weeks before being moved to Glangwili Hospital in Carmarthen. Mari was eventually discharged and able to return to her family home in Llangynnwr on March 8, 2022 - almost four months after her birth.

Now, Mari is a healthy two year old who enjoys singing and chatting all day, according to her mum. Bethan said: "She's doing amazingly. She was able to be breastfed at four months old, we were so proud. She has grown from strength to strength."

"She's on par with her two-year-old friends. She's doing amazingly and that is completely down to the care she got to get her to this point. She loves Peppa Pig, she sings all day and she's a real chatterbox - she doesn't stop. She's a joy to be around and she brings joy to other people as well. We are just so proud of her."

Looking back at the experience the little family endured over two years ago, Bethan said: "I think it must've changed someone to go through what we went through. There's no point in lying, it was a traumatic experience.

"It's probably made me a little more anxious about illnesses. Nothing can prepare you for motherhood, it doesn't matter what happens. And although we have been through hell and back, I am so happy now - both Carwyn and I, and we feel so lucky, considering the situation that we had as not everyone, sadly, gets to leave with their baby. We feel so lucky that we did, and we are so grateful for the NHS."

In a heartfelt gesture of gratitude towards the hospitals and staff who supported his family, Carwyn, a secondary school teacher, is gearing up for an extraordinary feat this August. He will tackle four ultra marathons in just four days, a challenge he has named Mari Glyn's Journey Home.

Accompanied by supportive friends and fellow runners, Carwyn will embark on a 110-mile run from St Michael's Hospital in Bristol to Wales, passing through Singleton Hospital in Swansea and Glangwili Hospital in Carmarthen, retracing the steps of his child's journey to recovery.

The funds raised from this endurance test will benefit Cots for Tots charity in Bristol, the Cwtsh Clos neonatal intensive care unit accommodation at Swansea Bay Health charity, and the SBCU at Glangwili Hospital through Hywel Dda Health charities. With no set target, Carwyn encourages anyone willing to join in the running or fundraising efforts.

Carwyn's motivation for the challenge is deeply rooted in his family's experience. "It's been over two years, but it still feels very real what we went through," he said.

"Bethan and I decided to speak our minds throughout just to process it. It is something that is so difficult to process, at the time it felt like a rollercoaster of emotions - the ups and downs, it was a lot.

"But the one thing that kept us going was hope. Bethan and I had each other's backs throughout the whole time. And it felt like we were really a part of the process with St Michael's Hospital in Bristol - they would ask for our input, so you felt like you were a part of a team and that you were trying to save Mari Glyn's life. Being a part of that team on a daily basis and having that input, that is what gave you hope, even in the darkest times."

He also spoke about how fundraising became a way to give back. "Doing this challenge will be like a closure for us as well," Carwyn added.

"It's something I had been thinking about in Bristol over two and a half years ago. It was one of the first things I thought - how can we repay these people? We were either going to take Mari home with us or we weren't. We did and it was a positive experience for us eventually. Anything we can do as a family to repay for the care and support they showed us and Mari, we will do it."