Only seconds after her sweet baby boy was born, Karly Herriott heard the nurse say, “his face is a bit funny.”
The new mother looked at her partner Luke, who was flushed, the color completely fading from his face. He “looked panicked,” she said.
Immediately after birth, little Legend was rushed to intensive care and the couple had to wait until the next day to see their newborn son, not knowing what was wrong.
Keep reading to learn why Loui shocked everyone when he pooped out!
On February 8, 2015, 27-year-old Karly Herriot, a veterinary nurse from England, gave birth to Loui in what she said was quick, “only three pushes.”
With pregnancy scans reporting normal development throughout, Herriott, now 35, and her partner Luke Heath, 36, had no reason to expect their child would be born with any health issues.
Excited to connect with her new son who made labor so easy, Herriott was shocked and confused when she was crowded by nurses and midwives who then grabbed the baby and took him away.
“I’d had such a normal pregnancy. When Loui was born, I fixated on hearing his voice and then it stopped. He stopped breathing and a nurse ran in and said, ‘there is something wrong with his face, his face is a bit funny’” Herriott continued, “She was in shock and before I could even say anything, they ran off with him.”
Her concern was heightened when she turned to look at Luke, “…and there was no colour left in his face. he looked distraught…He looked panicked,” she said.
Shortly after, the midwife returned to the room and explained to the new parents that their first-born child has Treacher Collins syndrome, a condition characterised by facial and cranial deformities.
Treacher Collins syndrome is a is a rare genetic disorder characterized by distinctive abnormalities of the head and face.
Also known as mandibulofacial dysostosis, the condition affects facial development, especially the cheekbones, jaws, ears and eyelids. These malformities often cause problems with breathing, swallowing, chewing, hearing and speech.
Treacher Collins syndrome happens in about one in in 50,000 births in worldwide.
The young couple eagerly waited until the next day to see their newborn, who was being stabilized and fitted with a breathing device.
“When I eventually saw him, he didn’t look the same as other babies,” Herriott said.
For the first three weeks of his life, Loui was sedated with a tube down his throat allowing him to breathe.
“It meant I couldn’t hold him, so it was difficult to develop a bond. I saw him every day, but I didn’t feel like he was my baby,” the mom shared, adding that when he was three weeks old, the tube was removed from his throat and had a tracheotomy so he could breathe by himself.
The Brighton boy, who was also born with undeveloped outer ears and a compromised middle ear is compromised, has to wear two bone anchored hearing aids–held in place with a headband–to pick up sounds. In the next year, his skull should be thick enough to surgically fix the hearing aids and rid of the headband arching over the top of his head.
The bones of Loui’s eye sockets are under-developed, and with small cheekbones that don’t allow more support, his eyes to slant downward.
Herriott and her partner named him Loui Legend.
“It was apparent very early on that he was a little legend, the way he got on with everything he has had to deal with,” his mom said, adding that her “heart breaks” when other children poke fun at his deformities. “Everyone stares every single day. Children come running into the next aisle at the supermarket just to have a look, even adults who should know better always try and get a second glance.”
Over the past summer, Herriott explains on the GoFundMe page that he had surgery to separate his jaws from his skull in a complete subcranial facial separation. Herriott writes, “…so it’s some serious healing he’s got to do. At the moment we’ve been told his stretched bone will be like a soft toffee consistency and this needs time and rest now the pin turning phase has ended for his body to do the rest of the healing and grow the bone.”
While loving the precious boy like the legend he is, his mom and dad are focused on his health and allowing him to live the most normal life possible. “I don’t want people to pick on him and call him names because of how he looks,” Herriott said. “He’s my baby and I would do anything for him.”
Today, Loui, now 8, is a fashion model, whose image can be seen in some impressive designer swag!
Over the next several years, the big brother to two siblings will have a string of surgeries that include nasal reconstruction and in his mid-teens, multistage reconstructive treatment to form the face with expected noticeable improvements.
In August, he traveled from his home in England to Washington State for further work with the specialists at Seattle Children’s Hospital.
The doting mother adds, “When he looks up at us with his bright blue eyes and beaming smile, that’s all we see and makes all the hard work worth it.”
Little Loui Legend is a big hero! We hope his new gig as a model will help introduce him into a world where he’s appreciated instead of mocked.
Please share this story so others can know what a legend Loui has become!
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