A Hull mum has spoken of her heartache after her little boy was born unable to swallow due to a rare birth defect.
Catherine Philipson had to wait an agonising seven days just to cuddle her new-born baby after he was born with a rare congenital abnormality which affects the throat of one in 3,500 babies as well as problems with his heart and lungs.
Archie Jury, who was born a day after his due-date, had to spend the first nine first nine weeks of his life in the neo-natal intensive care unit (NICU) at Hull’s Women and Children’s Hospital and undergo intense surgery while doctors tried to correct the problems he was born with.
“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,” said Ms Philipson. “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 (SCBU) 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 Ms Philipson’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. Archie’s heart works perfectly well, but the family see it as his “extra special” gift.
Now aged three, Ms Philipson says Archie is her “biggest achievement”‘ She 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.”
Now, Ms Philipson has spoken out to raise awareness of Archie’s birth defect for TOF week. She 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, which runs from July 9 to 15, 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.”
For further information and help about OA and TOF, visit the TOFS website.
TOFS is a charity that works with families and sufferers of OA and TOF, helping to educate them and provide emotional support.