My baby was born with no gut

Our writer hears the amazing survival story of brave three-year-old Tuffel Brink

Three-year-old Tuffel Brink with his mum EvelyneSP

Three-year-old Tuffel Brink with his mum Evelyne

When Evelyne Brink discovered she was expecting her first baby she had hoped her pregnancy would be a special time, high on hormones and delighted by the growing life inside her.

Like most mums-to-be she couldn't wait for her 20-week scan and was looking forward to finding out what colour she would be painting the nursery.

What Evelyne didn't expect to hear were the words: "I've never seen anything like that, can you sit outside for a moment?" Scans of Evelyne's womb initially led doctors to believe that her baby had a bowel cyst, which might either disappear or have to be removed surgically after he was born.

But it wasn't until her little boy, named Tuffel, arrived in January 2012, that the extent of his problems were revealed.

"There was some sort of black hole in my baby's tummy," explains Evelyne, 38, a personal and executive coach who lives in Mottingham, south-east London, with her partner Thomas Westenholz.

In a healthy adult, the small intestine is approximately six metres long. Anything less than two metres is classified as Short Bowel Syndrome (SBS) where there is too little of the intestine left to absorb enough nutrients from food properly.

In Tuffel's case his entire small intestine had been destroyed, meaning he would never be able to eat or digest food.

There was some sort of black hole in my baby's tummy

Evelyne Brink

When his surgeons removed all the damaged tissue there was nothing left to repair.

"We were told he wouldn't make it, something that would be unbearable for any parent to hear. I refused to believe it and couldn't even grasp the horror of those words," says Evelyne.

"I was being prepared for a life of complications; years in hospital in a best case scenario, a life dependent on machines, ups and downs and uncertainty for the rest of his possibly very little and limited time."

Tuffel spent the first six months of his life in Evelina London Children's Hospital before being transferred to King's College Hospital.

He was kept alive by a special solution called Total Parenteral Nutrition (TPN) which Evelyne calls "space food" which is delivered via a catheter directly into his bloodstream. "I charge him like an iPhone overnight," says Evelyne.

"We plug him in and disconnect him in the morning. He is fed overnight for 12 hours."

To look at Tuffel, who has just turned three, no one would suspect the extraordinary odds this cherubic golden-haired, blue-eyed toddler has faced - not to mention the innumerable medical procedures he has endured to date.

"If you met him, you would not know there was anything wrong," says Evelyne, who was once a Madonna impersonator.

"He is a normal size, he is beautifully developed. He is bright as a button and sleeps like a baby."

But despite having become the first survivor of "ultra-short gut" syndrome, his parents know that he will need a better long-term solution if he is to carry on thriving. Being dependent on artificial nutrition carries the constant risk of liver damage or dangerous line infections.

Research by Dr Paolo De Coppi at Great Ormond Street Hospital began in September into stem cell treatments which may in the future allow a new bowel to be created for Tuffel.

His parents believe this would be a better solution than a bowel transplant (one of the most difficult types of transplant due to the complex nature of the organ) which would require Tuffel to take immuno-suppressant drugs for the rest of his life.

Scientists hope it will be possible to infuse donor organs with stem cells in order to create rejection-free transplants for children like Tuffel.

Dr De Coppi has already successfully transplanted a stem cell-treated windpipe and he is now working on the small intestine.

However, until a breakthrough comes, the family are in limbo. "We continue to live a life of uncertainty, hoping for the best," says Evelyne.

• It Takes Guts: A Story Of Love, Hope And A Missing Bowel by Evelyne Brink is published by Panoma Press (£13.99).

To order, call The Express Bookshop on 01872 562310, send a cheque/PO payable to Express Bookshop to Express Bookshop, PO Box 200, Falmouth TR11 4WJ or order online at www.expressbookshop.com.

UK delivery is free. To find out more about Tuffel's story visit tuffelstory.com.

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