Incredible journey of the premature child who fell seriously ill in pandemic
FOR the first few weeks of his life tiny newborn Taliesin Howells was kept alive entirely by machines.
The critically ill baby, who was born three months early, had been diagnosed with life-threatening infections in his blood and bones and had suffered swelling so severe his fingers had turned white.
As well as needing 14 different pumps to provide him with the medicine, blood, and plasma he desperately needed he was also on an oscillator, which did all the breathing for him.
“The pain of having your baby so ill and not even being able to hold him felt excruciating at times but hearing the anguish of other parents losing their baby was almost too much to bear,” admitted Taliesin’s mum, Liz Howells. “It’s something I heard several times during our stay on the unit [in Cardiff ] and all I could do was sit at Taliesin’s cotside and cry – for them and for us.”
When Taliesin was born at the Royal Gwent Hospital weighing 2lb 10oz on February 25, 2020, his parents, Liz and Rhys, had only a few seconds with him before he was taken away to be stabilised.
Despite being so premature he did well at first and needed minimal support with his breathing. It allowed the couple to hold their son for the first time. It would, however, be their last for many weeks.
When he was a few days old doctors discovered that Taliesin’s protein levels were dangerously high and he was diagnosed with PKU – a condition where enzymes needed to break down protein in the body are absent.
Treatment for the potentially lifethreatening condition is usually to reduce protein intake from food with a specific PKU formula. But as breast milk, which is naturally high in protein, is also essential for such a small baby’s health, the clinical team faced a challenge to get the balance right.
But before long Taliesin’s leg started to swell – a potential sign of sepsis – so the newborn was transferred to a specialist unit at Singleton Hospital in Swansea, which was the third hospital in his short life.
Liz added: “The day Taliesin moved [to Swansea] was the first day of lockdown. While on our way to the hospital we received a call from a nurse on the unit who told us that as of that morning only one parent would be allowed in.
“It was such a horrendous feeling. Knowing that our baby was so unwell, but not exactly what was wrong, that we had been so close to going home but we were now worse off than we’d ever been. And knowing that whatever was behind those ward doors I would have to face alone while Rhys couldn’t even be with us.
“Rhys spent weeks apart from Taliesin after that and during that time I had to call him to tell him the news that Taliesin had been put on a ventilator, had developed oedema (severe swelling), and was on strong antibiotics for a suspected infection in the bone of his leg.
“After 11 long days things did briefly start to look up and Taliesin was taken off the ventilator. But then late one night we received a call that every NICU parent dreads. Taliesin was going downhill again fast and I needed to go in straightaway.”
With blood tests revealing dangerously high infection markers Taliesin was given two blood transfusions before being rushed to the neonatal intensive care unit in Cardiff.
There he was diagnosed with sepsis and osteomyelitis infections of both the blood and bone. By this point Taliesin’s infection markers were 242 – some 160 above the number classed as critical.
His body was swollen to the point where the pressure had caused his fingers to turn white. Bruises that had started to appear on his leg were turning into huge blood blisters.
“The team in Cardiff were amazing right from the start. I’d never seen anything like it,” Liz added.
“Taliesin was placed in a state-ofthe-art incubator, which I found out later had been funded by the Noah’s Ark Charity, and within minutes of us arriving we were introduced to a new consultant, who ordered countless different tests.
“Taliesin’s antibiotics were sent off to be assessed by the microbiology team and soon after he was down in MRI having his leg assessed. He was put on three types of antibiotics and then it was a waiting game to see if they’d take effect.
“By that point I felt like an expert in understanding the medical lingo and various monitors. I had become obsessed with the numbers, panicking each time his oxygen levels or heart rate dropped. It’s hard to describe the intensity of that experience or the level of pure adrenalin I felt my body was running on.”
Gradually, over a period of weeks, Taliesin’s condition again started to improve. The skin on his body, which had been badly stretched by the swelling, started to heal, as did the wounds left from the blood blisters on his leg.
Ten days after their arrival in Cardiff Taliesin was considered well enough to come off the ventilator. But, yet again, the improvement was short-lived.
Liz added: “I was changing Taliesin’s nappy when I suddenly noticed that his skin was turning grey and his stomach was heaving.
“The nurse sounded the alarm and within seconds we were surrounded by doctors, who ventilated him again and made attempts to catheterise him. I was ushered out of the room and had to ring my husband to break the most frightening news.
“This time Taliesin was so ill that Rhys was allowed in. We sat up with him all night watching his oxygen levels drop and his dependency on the ventilator increase until it was at 100% and Taliesin was transferred to the last resort – an oscillator.
“But his sats continued to drop, his blood refused to clot, and his blood pressure remained dangerously low. On what also happened to be our first wedding anniversary we were taken aside and told the worst news possible. Though they would continue to try and work out what was wrong at that point there was nothing more they could do to help our baby. It was horrendous. We sat at his bedside and prayed, taking it hour by hour.”
Miraculously Taliesin held on through that day and night and by the following morning some further tests had come back. The strong antibiotics which had been essential to save Taliesin during the previous infections had also killed off much of the good bacteria in his body, leading to fungal sepsis.
Tiny Taliesin was still critically ill but at least now the clinical team knew what to treat.
Over the next four weeks Taliesin remained in his incubator and attached to the oscillator that breathed for him. His condition was so unstable that even the slightest change in position would cause his blood pressure and heart rate to plummet.
“It was often the kindness of other people that pulled us through,” Liz, from Llanelli, recalled.
“By this point Rhys and I were allowed to take it in turns to be with Taliesin but Rhys is an essential worker so had to travel hours each week to come to and from the hospital.
“It meant that we weren’t able to be there for each other emotionally or practically either. The concept of leaving your baby on their own to get food or coffee when they were so ill was terrifying, as was the fear of somehow bringing Covid back with you.
“Thankfully for the whole time that we were in Cardiff the Noah’s Ark Charity provided food for the parent kitchens and we were so grateful for that. I remember being amazed that people would be so kind as to support a charity helping NICU parents at such a strange time. The doctors and nurses became our temporary family while we couldn’t be with ours, looking after us almost as much as they did Taliesin.
“Once, when Taliesin had improved a bit, I came in to find that the nurses had rearranged the whole bay so that he could come out of his incubator on his machines and I could hold him. Another time, after mentioning that I’d never given him a bath, they arranged for me to give him one complete with spa music playing in the background.”
Thankfully there were no more major setbacks for Taliesin after that. By the end of May last year he was well enough to be transferred to a hospital closer to home in Llanelli.
Then on July 20, for the very first time, five-month-old Taliesin finally went home.
Liz said: “I cried for hours on that first night. I just couldn’t believe that we were finally home after being right on the edge of losing him so many times.
“He was finally ours.”