A WOMAN born with a rare condition has to live with a metal tube in her throat to help her breath.
Alii Robinson was born with an extremely rare condition which meant that her lower jaw and upper airway couldn’t form properly.
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Due to the severity, doctors had to perform an emergency tracheostomy operation weeks after she was born.
A tube and a metal tube were inserted into Alii’s throat to help her breath normally at just five weeks.
The now-32-year-old has been living with the metal tube in her throat since and even has to take it out everyday to clean it.
Alii, from Hampshire, was diagnosed with Pierre Robin Syndrome when she was born.
Her condition meant that she always had to be on her front to stop her airway being completely shut off.
Very quickly, it was decided that a tracheostomy operation was the only option.
The procedure involved making a small hole, called a stoma, in the front of Alii’s neck where a tube was inserted through the opening and into her windpipe.
The tube was then lined with a metal tube called an inner canula.
To prevent the build up of mucus, Alii has to clean the inner canula every day and the whole tube every two weeks.
Alii, who works as an MDT lead in the NHS, said: “The surgery was done as an emergency procedure by a general pediatric surgeon.
“It was actually inserted higher than most tracheostomy’s are, so that was a contributing factor as to why I can’t have it removed.
“So, with that and with my airway being upside down and back to front it’s meant that I have had to keep it.”
Having a permanent tracheotomy means that Alii struggles with certain things that many people may take for granted – such as walking and talking at the same time.
Alii said: “There are lots of things that I struggle with.
“I can’t walk and talk at the same time. I get out of breath walking up stairs and if I am poorly, I can get out of breath just sitting down.
“I can’t drink alcohol either, as it lowers my immune system too much and I get sick, so I haven’t drunk alcohol for 10 years.”
Since the procedure, Alii has had to go through 66 different surgeries throughout her life.
The main one being in 2007, when she had to have her lower and upper jaw broken and put back together.
Being in and out of hospital for much of her life lead to Alii starting a blog to talk about her problems as a form of self therapy.
It is a rare congenital birth defect characterized by an underdeveloped jaw, backward displacement of the tongue and upper airway obstruction.
What is Pierre Robin Syndrome?
The cause of Pierre Robin Syndrome or Sequence remains unknown but results from a series of anomalies experienced in the uterus before birth.
It begins with an underdeveloped jaw, which causes displacement of the tongue and subsequent formation of a U-shaped cleft palate.
Babies born with PRS commonly experience trouble breathing and feeding early on, resulting from the tongue’s position, smaller jaw size and the cleft palate formation.
Other symptoms include repeated ear infections and natal teeth, or teeth that are present at birth.
The condition can be diagnosed with a physical exam, before treatment comes in stages.
As PRS affects a variety of functions, several specialists will be involved in care.
For example, if breathing is impacted, it may be recommended that the patient gets surgery to enlarge the lower jaw or insert a tracheotomy to create an opening in the windpipe.
A feeding tube may be recommended as a temporary measure, but more long term could result in a gastric tube.
Tubes may be inserted into the ear to lessen fluid buildup.
It was through this blog that she ended up posting her first video to her TikTok page, @littlesilvertube.
This became an avenue for Alii to help people who are suffering or have loved ones that have the same condition.
Alii said: “As the condition is very rare, there isn’t anything official to give people support.
“One woman told me her son, who had a tracheostomy, was too scared to come out of his room due to bullying.
“I never experienced that as I had great friends and three amazing brothers who looked out for me.
“Everyone’s experience is different but I would love to help people on a larger scale and set up a charity.
“I don’t have the funds at the moment, but that is an ambition of mine.
“Just the other day I was on a live on TikTok and I managed to connect two mums who have children with Pierre Robin Syndrome.
“They were saying they had never met anyone who can understand their problems, so the fact that they connected through me was really special.”
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