'All I wanted was for him to be breathing on his own', says Emmerdale star Scott Taylor about son Leo's bowel disorder
That's my boy: Scott with Leo now
Perfect, tiny and pink – baby Leo was handed to his mother Carla Tomlinson after a 72-hour, yet straightforward, labour. It was the delightful end to a textbook pregnancy during which Carla hadn’t even suffered morning sickness.
That evening a proud new father, Emmerdale actor Scott Taylor, rushed home to put up a banner that read ‘Welcome come Carla and Leo!’ in the living room of their home in Cheetwood, Manchester. It was, sadly, presumptuous.
‘To be honest, we took it for granted that everything would be easy,’ recalls Carla, 29, a radio promoter. ‘If you’d asked me then, I’d have said I knew it would all be OK; the pregnancy, and the birth.
‘I read all the books, and skipped over the chapters about what to do if you have a sick baby, because I thought we wouldn’t have to worry about that.’
Scott, also 29, continues: ‘When Carla was pregnant, I remember saying I wanted our baby to the cleverest and wanted to inspire him to be an amazing member of society.
‘After he was born all I wanted for him was to be able to breathe on his own.’
Problems began the morning following the birth, when Leo wouldn’t feed. ‘He just didn’t seem interested, and all he wanted to do was sleep. Then our midwife noticed his stomach looked strangely bloated,’ says Carla. Nurses suggested the newborn be taken for a scan. It was, they assured, probably nothing to worry about.
However, ever so slowly as the minutes passed, a sickening feeling of dread crept in. And then the result of the scan came back. ‘Scott and I were standing over Leo in his incubator, thinking how beautiful he looked, when a doctor asked us to come to a side room,’ recalls Carla. ‘I remember his exact words: “I’m afraid Leo seems to have a perforation in his bowel so we are arranging for an emergency ambulance to take him to Manchester Children’s Hospital.”
‘It was as if the room was spinning. Everything had been going so well that I was simply not prepared for this.
‘How could my baby have looked so healthy to us when he was born and even just minutes earlier when he had the scan He hadn’t been feeding well but surely that’s often the case with newborn babies I was so frightened and confused that I couldn’t ask questions because I couldn’t even speak.
‘We followed the ambulance to the children’s hospital and when we arrived we found 12 people standing around his cot. One of the nurses said to me, “Are you Mum” … No one had called me a “Mum” until then. But at that moment reality hit me – I was a mother. And I had a baby son who was desperately ill.’
Baby Leo was suffering from
necrotising enterocolitis (NEC), a condition that causes parts of the
intestines to become inflamed and then die.
condition is the most common gastrointestinal emergency in newborns,
affecting roughly three in every 1,000 live births (the equivalent to
2,000 babies each year). Although it mainly affects premature infants,
one in ten cases occur in full-term babies such as Leo. It usually
occurs within ten days of birth.
Leo in hospital soon after he was born when he was diagnosed with a perforated bowel
Although NEC can happen spontaneously, Jim Bruce, consultant surgeon at Manchester Children’s Hospital, who treated Leo says: ‘It can be due to an obstruction somewhere along the digestive tract. In Leo’s case, there was a narrowing close to his back passage which had caused a build-up of pressure which triggered the illness.’
In most cases, NEC can be treated without surgery, by resting the intestine using intravenous feeding and treating any infection with medication.
But dead gut tissue is weak, and in some cases may tear – or perforate – which can lead to toxins from the bowel entering the bloodstream, causing potentially fatal infection.
Also, if the child does not respond to early treatment the intestine can become narrowed with scar tissue. In these cases, surgery is necessary – and for Leo, tests showed this was needed immediately.
Desperately worried, all Carla and Scott could do was stand by and watch. ‘Leo was crying with hunger yet unable to feed so was put on to a drip to get fluids and nutrients into him, to strengthen him for the surgery,’ says Carla.
Ironically, Scott – famous for his role as Joe Chappell, carer to paralysed Emmerdale character Jackson Walsh, who took his own life – had appeared for four years in a popular TV hospital series The Royal. Playing paramedic Frankie Robinson meant learning medical lingo.
Scott says: ‘They started out saying things like “Leo has a tear in his tummy”, but I wanted them to tell us exactly what was happening in grown-up language. To me, knowledge is power and it was this that kept me calm in such a terrifying situation. I wanted to know exactly what was being done and why.’
Leo was in surgery for five hours – during which time the most seriously affected parts of his intestine were removed. ‘This is done in the hope that it will halt the disease from progressing, but in some cases it can continue and require more surgery at a later date,’ says Mr Bruce.
‘If we are satisfied that all the infected intestine has been removed, we simply stitch everything back together. But if there are other parts that are diseased, but not severely, we redirect part of the intestine, creating one or more openings at the surface of the skin around the abdomen, known as a stoma.
‘This is done so that waste matter can pass through and be disposed of, without reaching the lower parts of the intestine and bowel, which need time to
Leo with his mum Carla
heal. Further stomas allow naturally produced intestinal mucous and gas to pass out.’
A plastic pouch known as a colostomy bag is attached to one or more of the stomas to collect waste. Once the bowel has healed, after a number of months, the operation can be reversed – restoring normal gut function.
‘After surgery, he looked so very ill,’ says Carla. ‘He had all these drips attached to his body, even on his scalp, to give him antibiotics, morphine and fluids.
‘It hurt so much to see my baby like this that I really did think I would die from a broken heart.’
Yet after four days of uncertainty about whether Leo – who was now on a ventilator – would be able to breathe unaided, to Carla and Scott’s relief he began to recover. A week after surgery he started to breathe on his own.
Scott had been able to go to work because the director of Emmerdale – in which he was appearing at the time – changed the shooting schedule to fit around him.
But, he says, he had found the situation very difficult to cope with. He didn’t tell anyone else on the show what had happened at that point – and was still being congratulated on Leo’s birth a week later when he was actually fighting for life.
Scott says: ‘Then I told Danny [Miller, who plays gay teenager Aaron Livesy], Adam [Thomas, farm manager Adam Barton] and Pauline [Quirk, Hazel Rhodes, mother of Jackson] and they were massively supportive. But otherwise I didn’t want to talk about it. It was too painful.’
Once Leo was discharged from hospital on March 10, at just under a month old, Carla and Scott at last could celebrate – although they were told that they would have to empty his colostomy bag frequently, sometimes 12 to 15 times a day.
Carla says: ‘As this was being explained to us I could see that Scott understood immediately. For me, it took longer to sink in. From giving birth to getting used to the idea of my baby having not one, but three, stomas I was still in shock.
‘The bowel wasn’t yet working so there was no waste, just a bandage over the scar from surgery and the three stomas. The goal was to get to Leo’s first birthday when, all being well, the stomas could be reversed.’
Leo was in and out of hospital for the best part of nine months during which time Carla and Scott had to learn the practicalities of dealing with child stomas. ‘The challenge was to keep him clean yet give him some form of a normal life,’ she says.
‘I had gone from a mindset of: “Gosh, we’ll be changing goodness knows how many nappies a day” to trying to find information about child stomas of which there was very little – I couldn’t find much at all on the internet.
‘There is plenty of information about adults but nothing about children. I had a million questions and nobody to ask, even the hospital couldn’t give me the answers I needed, such as what is it really like living with a baby with a stoma How do you make the bags last What is life like after the stoma is closed And why do the bags always leak when you’re out at lunch with friends
‘We did have a specialist nurse to help us but it was still very difficult and, because of this, I have recently started a stoma support group on Facebook. The colostomy bags are a challenge – the skin gets very sore and red and the stoma itself leaks fluid containing chemicals from the digestive system, which can burn the baby’s skin.’
Leo’s stoma was finally reversed at the end of November, when the holes were closed and his stomach stitched up. Mr Bruce explains: ‘The intestine is a long tube – so to make a stoma it has to be divided. The stoma is closed and reversed by joining the ends of the intestine together, allowing waste to flow through.’
In the future, as with any abdominal surgery, there is the risk that Leo might develop adhesions, scar tissue which forms abnormally between internal organs and tissues, joining them.
These can cause pain and in more serious cases require further surgery.
Yet for now, he is the epitome of a happy bouncing baby.
‘He’s ten months old and into everything, pulling himself up to try to walk and chewing everything in sight,’ Carla says.
‘The health visitor came last week and said he was exactly at the stage he should be.
‘One strange happened – the other day, we were in a cafe, and two nurses in uniform came in.
‘Leo is normally really smiley, but he froze and wouldn’t take his eyes off them. I think he remembers what happened in some way. I’m sure that will fade.
‘It all seems like a distant nightmare to us too. And after all this, I have never been so happy to change a dirty nappy.’
lFor Carla and Scott’s stoma support page, visit facebook.com/groups/239635489433672, rmchcharity.org.uk