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HARD TO STOMACH

I was three stone at 15 – the same weight as a four-year-old – but I wasn’t anorexic

A STUDENT who weighed just three stone at the age of 15 due to a rare medical condition reveals how she was constantly mistaken for having an eating disorder.

But Katie Tancred, 20, from Chatham, Kent, did not have anorexia - she actually suffered from exomphalos major, which causes severe stomach and digestive problems.

 Katie Tancred, pictured at 15, weighed three stone, putting her body mass index at zero
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Katie Tancred, pictured at 15, weighed three stone, putting her body mass index at zeroCredit: Sonja Horsman

Diagnosed at birth, it is a weakness in the baby’s abdominal wall where the umbilical cord joins it.

Katie, who as a teen weighed the same as a four-year-old, “loved food” but was unable to digest it. The condition eventually culminated in her being raced to hospital – dehydrated, exhausted and malnourished.

Now, after 33 operations, she weighs nearly seven stone and can eat small meals – and, happily, is no longer asked if she has an eating disorder.

Katie, who is studying creative media production at Chatham College, told The Sun Online: “People at school and in the street would look at me and I’d see them thinking, ‘She’s so skinny’.  I’d get asked, ‘Do you have anorexia?’ I didn’t. I wanted nothing more than to eat.

 Katie, pictured now, is a healthy seven stone
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Katie, pictured now, is a healthy seven stoneCredit: Sonja Horsman

“Arriving at the hospital, and seeing the doctors, I finally realised I didn’t have an eating disorder. Actually, I was very, very ill.”

Katie’s ordeal started before she was born, when her mum’s Tina prenatal scan at 16 weeks indicated something was wrong with the development of her unborn daughter's stomach.

When Katie was born on June 12, 1997, at Lewisham Hospital, South East London, it was confirmed she had exomphalos major, a disorder which Great Ormond Street Hospital currently estimate affects two in 5,000 births a year.

What is exomphalos?

  • According to Great Ormond Street Hospital, it occurs when a child’s abdomen does not develop fully while in the womb
  • Early in all pregnancies, the intestine develops inside the umbilical cord and then usually moves inside the abdomen a few weeks later. In exomphalos, the intestines and sometimes other organs such as the liver, remain inside the umbilical cord but outside the abdomen
  • The cause is not known but there are two types: exomphalos minor where the opening is less than 4cm and only containing the intestine, and exomphalos major where the opening is greater than 4cm and/or with the liver inside the cord
  • It needs to be treated soon after birth
  • According to the hospital, depending on the size of the exomphalos, the baby may need to have it repaired in one operation or over several

Katie said: “It meant my digestive organs, stomach, liver, intestines and bowel, were formed outside my body. There is no reason why I got it, it just happened.”

Shortly after birth, Katie underwent a series of operations to try to fix her stomach. She added: “But I still struggled to eat, although I could.”

But, at the age of 14, Katie’s condition suddenly worsened, and she was vomiting virtually after every meal. Her weight quickly decreased, leaving her weak and feeble.

 Katie was a baby when she first underwent surgery for digestive problems
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Katie was a baby when she first underwent surgery for digestive problemsCredit: Sonja Horsman

Shockingly, her body mass index (BMI) – the fat to muscle ratio – measured zero, meaning she was life-threateningly underweight. A healthy BMI according to the NHS, is between 18.5 and 25.

She said: “People didn’t realise I wasn’t anorexic. At one point, even I wondered if I was. Otherwise why would I be shrinking?

“I was so slim – you could see my bones jutting out. I would be asked, ‘Do you have anorexia?’ But I didn’t. I loved food. I was desperate to eat, I just couldn’t.”

 Now studying at college, Katie is able to eat in the day and is tube fed at night
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Now studying at college, Katie is able to eat in the day and is tube fed at nightCredit: Sonja Horsman

At her tiniest, Katie weighed just three stone. She became so weak her concerned parents Tina and Martin took her to Medway Maritime Hospital, where, seeing her size, doctors immediately referred her to Kings College Hospital in London.

There she underwent 72 X-rays in just a few days, and the cause of her vomiting and inability to digest food properly was discovered.

Katie was so weak by that point she was put on a tube-feeding regime. In January 2013 she was well enough for a 12-hour operation to correct the problems with her stomach and have a feeding tube inserted.

Katie's diet now

  • Overnight and breakfast: tube fed
  • Mid morning: A snack such as a packet of crisp and piece of fruit
  • Mid afternoon: Another snack such as a yoghurt
  • Evening: A smaller version of her family's meal such as sausage and mash with vegetables

She said: “It emerged that all my digestive organs were in the wrong place. My stomach had expanded hugely and grown up the left side of my body and my liver was where my stomach should have been.

“It explained why I was vomiting when I tried to eat anything and was at high risk of organ failure.

“It stemmed from the digestive problems which I had suffered at birth. But it was very unusual so it was jokingly nicknamed ‘Katie’s Illness’.”

After the operation, which involved relocating her digestive organs, she continued to be fed through a tube before undergoing more operations to ensure her organs stayed in place.

Katie said: “Now, I can eat small meals in the day, and am tube fed at night. But I am more than double the weight I was when I went in and feel so healthy.

“I have had more than 30 operations throughout my life in total. I still have the odd complications and struggles with my health physically and mentally but I am doing so much better… and no one asks if I have an eating disorder.”

Find more about the signs and symptoms of anorexia here.

Meanwhile Hannah nearly died after battling anorexia - but not weighs a healthy size 12.

Student Connie Inglis who was given weeks to live due to her severe anorexia says she used social media to spread a body positive message
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