One year old Kody has a rare lymphatic disorder which has caused massive swelling in his neck and face. He urgently needs to have his protruding tongue reduced.
A thousand children are referred to Great Ormond Street's Ear, Nose and Throat department every year. Kody Barrowman who lives just outside Glasgow is one of their youngest patients. One year old Kody has an extremely rare condition which has caused a mass of cysts to grow around his neck, mouth and tongue.
His mother, Cheryl, only discovered there was something wrong with him hours before he was born. Doctors were concerned that Kody might not survive and Cheryl was rushed to theatre where he was delivered by emergency caesarean.
The growth on Kody's neck was a collection of cysts caused by a rare lymphatic disorder called Cystic Hygroma. He was referred to Great Ormond Street Hospital and put under the care of leading head and neck specialist Ben Hartley. Kody's case was one of the severest he's ever seen.
He explains the condition "In our body we have a number of blood vessels which are our arteries and veins, but we've also got another system which is the lymphatic system and that drains clear fluid from around the body up into the neck. What Kody's been born with, are some abnormal lymphatics which have formed a dense network of cysts throughout his neck. Shortly after his birth, Kody had a tracheostomy to help with his breathing".
Due to the severity of his condition, Kody requires a lot of special care from both his parents; his tracheostomy needs cleaning every day. As a trauma nurse, his father Dean, is more qualified than most to look after his son.
Mr Hartley sums up the situation "It's not possible to remove the malformation completely, but it is possible to improve the situation. The Barrowmans felt that the biggest problem, at the moment, is his tongue which is sticking out a lot all the time and tending to get injured and bleed. So the surgery we're planning is to reduce the tongue and remove some of the cysts below the tongue to make more room".
It will be the first of many operations for Kody. Mr Hartley intends to reduce the tongue in such a way that the tongue tip will be retained to try and prevent future speech problems. If Kody's tongue reconstruction goes well, he should start to catch up with children his own age. Right now he struggles to make baby noises and he can't eat so he has to be fed through a tube.
Camera's View of Kody's Throat
Before the operation begins, Mr Hartley checks Kody's throat and windpipe with a surgical camera. The mass of white cysts show the severity of Kody's condition. In a healthy child, the area would look smooth and pink. His windpipe has become very narrow due to the weight and pressure of the cysts.
First, Mr Harley will be focusing on the cysts in Kody's mouth, he's hoping to remove enough of them to make space for his tongue. He talks us through the operation "The first thing I do is try to identify the sub-mandibular ducts which carry the saliva. Once we've identified the ducts we can start to remove some of the cysts".
The cysts are buried in the flesh beneath Kody's tongue. Mr Hartley will need to make a large incision to remove them. An hour into surgery and Mr Hartley has hollowed out the floor of Kody's mouth and is ready to start working on the tongue. He will take a V-shaped wedge from the front of the tongue and stitch the remaining flaps together.
If this delicate part of the operation goes well, it will have a major impact on Kody's speech development. Mr Hartley uses a laser device to cut the tongue as a laser is precise and helps to control the bleeding. Although he still has a large amount of cysts left, Mr Hartley is confident his tongue reconstruction will make a huge difference to his life.
A week after the tongue reduction surgery, Kody can be discharged. He still has a lot of treatment ahead of him, but it's a relief for his parents that he's made it this far.
CREDITS: All of this information came from the UK Channel 5 "Child in a Million" documentary series