A woman has told how she can’t close her eyes or shut her mouth – after doctors accidentally “scooped out” her facial nerves as a baby.
Hannah Vaughn Setzer, 28, was born with cystic hygroma, a condition where multiple cysts grow – which has left her with “’literally thousands” of them in her head and neck.
During one of her many surgeries after birth, she claims doctors were scooping handfuls of cysts out of her head when they accidentally removed some of her facial nerves – leaving her unable to smile.
Her parents were advised they should abort her in the womb and that Hannah wouldn’t survive birth, and if she did wouldn’t be able to walk or talk, but they ignored doctors and she arrived in September 1990.
She was fitted with a feeding tube and tracheostomy (a breathing tube) as a newborn and defied medics by flourishing, changing her tube independently as a teenager and brushing off cruel comments from strangers.
Physically, disability rights advocate Hannah has completely proven them wrong, turning to health and fitness in adulthood – and she now blogs her journey under the moniker Feeding Tube Fitness.
Now, she’s brimming with self-confidence and passionate about educating people and advocating for disability rights.
Hannah, from Virginia, USA, said: “People have stared, pointed and whispered ‘what’s wrong with her?’ a million times over – I’ve heard it all.
“But I honestly don’t care – people can think I’m ugly or dumb or look weird or scary and that’s fine. I think I’m really great and that’s what matters.
“I really hate when people tell their kids to be quiet. Children are curious and should be taught that people look all different ways and it’s OK to ask questions and to be educated.
“I’d much rather a kid learns that people with disabilities and medical conditions exist in the world than be shunned and treated like a leper.”
Hannah has a sense of humour when it comes to her condition and accidentally scares people that see her sleeping.
“My eyes just roll back in my head so it seems dark when I sleep,” she explained. “It terrifies people that don’t anticipate it and I’ve scared plenty of people that way – oops!”
But she admits the cruel comments have got to her in the past.
“I can tell you unkind things that were said to me over 10 years ago word-for-word,” she said. “They stick with you, it’s hard. Words do have weight and do matter.
“People are ignorant, say dumb things and are uneducated. I just have to know that for every unkind thing or unkind person, there are multitudes of people that have my back.
“I am ridiculously confident in myself. I think and know I am beautiful, I like my body, I know I’m smart and I have a lot to offer the world.
“I also have an amazing husband, Brandon, and tribe of people who shower me with love daily and I’m very grateful.”
Hannah met Brandon, 29, online in January 2016 and the couple made things work long-distance before getting engaged a year later, and married in September 2017.
But her comfortable life is a far cry from what doctors predicted before she was born.
When Hannah was diagnosed with cystic hygroma in the womb, her worried parents had no idea what to expect, and doctors suggested they abort the baby.
Instead, she was born September 21st 1990 and medics immediately sprang into action to remove the cysts from her head and neck.
In the process, some of Hannah’s facial nerves were accidentally removed as doctors “scooped” out the cysts by the handful – leaving her unable to close her mouth or eyes.
A couple of days later she was fitted with a feeding tube and tracheostomy, which she has had ever since.
“There are literally thousands of the cysts in my head and neck, they’re in my airway and oesophagus so I need the trach and feeding tube,” Hannah explained.
“My trach doesn’t require much thought or maintenance – if anything gets stuck I can blow it out or run hot water through it.”
Food is a different story, and her tube requires more preparation and attention.
Hannah is able to swallow water in small quantities but things like smoothies and milkshakes are too thick.
She said: “I can taste and chew food and often crave it – I’ll either just wipe it out with a napkin or brush my teeth.
“I definitely get ‘hangry’! I have issues with stomach acid which can be really painful and gets worse the hungrier I am – so it’s in everyone’s best interests to get me food!”
Slightly more pressing is the worry that her stoma will leak – which it regularly does.
“I have gauze around it because it isn’t a perfect hole and it leaks food, stomach acid, water – pretty much whatever is in my stomach can leak out,” Hannah explained.
“I change the gauze pad between 10-20 times a day and it seems to have a mind of its own when it comes to how much it leaks day-to-day.
“The leaking does mean I ruin a lot of clothes, so I only buy cheap stuff. Pretty much everything I buy is second hand because it’s bound to get ruined within six months, so I don’t buy nice things.”
But otherwise, Hannah isn’t fazed by her condition, and instead focuses on the positives – like being able to eat whenever, wherever.
She said: “I can eat on the go, while I’m sleeping, in the shower, in the car… wherever! I can just hang my bag up and carry on my day, and at work I don’t need a lunch break so it means I can leave early.
“I honestly don’t care when other people eat around me. Brandon and I go out to dinner and I just sit there and talk a lot. I don’t typically take my bag out unless I have to – I’m not embarrassed, but why welcome more stares than I already get all the time?”
While doctors initially guessed she wouldn’t live to one years old, the prediction changed each year as Hannah grew and, despite numerous surgeries, flourished.
Physically, she is the strongest she has ever been after challenging herself to 365 days of movement in 2018.
“I wasn’t super active as a child. My parents were hesitant to let me play sports because they thought I’d get injured or hit in the face. They did let me do karate and I got to a yellow belt but then got kicked in the face and quit,” she said.
“Then in 2018 I decided to move my body for 30 days, and that became 50, then 100, then 365 – and now it’s just daily and I haven’t stopped yet!
“I’m healthier, happier, more active, more disciplined and way more grateful. I’m sure I would run faster if I wasn’t breathing through a hole in my neck but, honestly, nothing really stops me.”
You can follow Hannah’s journey on Instagram @feedingtube.fitness