Mum’s heartache after little boy born unable to swallow due to rare birth defect

A mum has recalled the heartache she suffered discovering her little boy was born unable to swallow.

Catherine Philipson’s son, Archie Jury, was born with a rare congenital abnormality which meant his mum couldn’t even cuddle him until he was seven days old.

Archie, now 3, had a tracheo-oesophageal fistula (TOF), which affects the throat of one in 3,500 babies.

It meant he had to spend the first nine weeks of his life in the neo-natal intensive care unit (NICU) at Hull’s Women and Children’s Hospital, reports Hull Daily Mail .

He had to undergo intense surgery for problems that included additional problems with his heart and lungs.

Catherine said: “We didn’t get our first cuddles with him until he was seven days old and he was still attached to machines, drips and his gastrostomy feeding line.

"Archie went through numerous operations.

“He was born a day after his due date with a normal delivery, and it was then that the doctors diagnosed Archie with TOF, oesophageal atresia (OA) and a duplicated left thumb.

“We spent nine weeks going from the red room to the blue room, and then to the special baby care unit and on to the Acorn Ward before being discharged."

With OA, the baby is born with a pouch at the top of its oesophagus, which prevents food from reaching the stomach.

Prior to surgery, this pouch can fill up with food and saliva, which can eventually overflow into the baby’s trachea entering the lungs and causing choking.

Having a TOF abnormality means the bottom end of the baby’s oesophagus is joined to its trachea windpipe.

Without surgical intervention, this causes air to pass from the windpipe to the food pipe and stomach. It can also allow stomach acid to pass into the lungs.

Archie was also born with heart problems, with Catherine’s 20-week scan revealing he had dextrocardia, meaning his heart is located in the right side of his chest, rather than the left, as well as an underdeveloped right lung.

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Archie’s heart works perfectly well, but the family see it as his “extra special” gift.

Catherine ranks Archie, now aged three, as her ‘biggest achievement’.

Catherine said: “I cannot believe how strong Archie really is, he went through dilations to stretch his oesophagus at just weeks old, which continued for almost three years.

"He also had his duplicated thumb corrected by his plastic surgeon. Without the doctors, nurses, surgeons and the other parents in the hospital my little boy wouldn’t be who he is today.

“He is my biggest achievement, I am so proud of our little boy and what he has had to go through for his first years of life.

"He is a thriving, happy and cheeky little boy who can now manage to eat beef burgers, hot dogs, strawberries and cake.”

Catherine said she was speaking out to raise awareness of Archie’s birth defect for TOF week, which runs from July 9 to 15.

Catherine said: "Imagining your child being unable to swallow is a scary thought, but it’s a reality for the parents of one in every 3,500 babies.

“For TOF awareness week, I wanted to share my son’s story as I find it incredible that hardly anyone knows about the condition.

"I hope spreading the word makes people realise not all disabilities are visual.”

Tracheo-Oesophageal Fistula Support (TOFS) is a charity that works with families and sufferers of OA and TOF, helping to educate them and provide emotional support.

To learn more about its work, visit https://www.tofs.org.uk/home.aspx

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