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The attractive teenager in the TikTok videos smiles, lip-syncs and moves to the beat of popular TikTok songs. Her vivacious personality shines through, her glow captures your attention.
Next to her sweet smile, a thin tube runs from her nostril, attached neatly to her cheek, partially camouflaged by her long locks. She seems oblivious to it.
Yet, Tammie Ong’s life, as it stands now, depends on this tube.
It is attached to her small intestine and delivers liquid meals continuously throughout the day to sustain her. Each bottle costs about $3 and she requires eight to nine of them each day.
“When I’m my parents’ most expensive child…” the 18-year-old, who has two older siblings, posts in jest on another TikTok video.
Watch closer however, and one notices she is in a hospital ward.
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Tammie cannot eat without feeling nauseous, vomiting or getting abdominal pains. For Chinese New Year, she could only watch while her family enjoyed their steamboat reunion dinner and others around her snacked on goodies.
“I really miss eating. I have been eating normally my whole life and one day, I just couldn’t eat without feeling sick,” she tells The Pride.
Last November, she was diagnosed with Superior Mesenteric Artery Syndrome (SMAS). It is a rare condition that affects the small intestine — the duodenum (first part of the small intestine) is compressed between two arteries (the aorta and a branch of the aorta called the superior mesenteric artery). This causes partial or complete blockage of the duodenum.
Researchers estimate that 0.1 to 0.3% of people in the US have the disorder, which occurs with greater frequency among teenagers and young adults, but can occur in individuals of any age.
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For Tammie, the event that triggered it all started about half a year ago when she had what seemed like a common cold. Then one night, a yellow, fluorescent-like fluid flowed out from her nose. This happened twice, and on the second time, things turned awry.
“I had these banging headaches, vertigo, dizziness, nausea and vomiting,” recalled Tammie. “I couldn’t even walk.”
At the hospital, doctors found that Tammie had a cerebrospinal fluid (CSF) leak, where the fluid that acts as a cushion for the brain and spinal cord escapes through a tear in the membranes that surround these organs.
There can be many reasons why this happens but for Tammie, it occurred spontaneously. As hers was a small tear, doctors told her she would recover with sufficient bed rest.
While Tammie recovered from the CSF leak, she lost a lot of weight as she could not eat much due to nausea and vomiting. Significant weight loss is one of the causes of SMAS.
Reaching this diagnosis, however, was a long and arduous process. No one understood why Tammie continued to feel nauseous and vomit.
“Whatever I ate, I threw up. It was one of the lowest points in my life. I was miserable, angry, like, what was going on with my body?” says Tammie, who has been battling with undiagnosed stomach issues since Primary 4.
Weeks went by as her symptoms continued without a diagnosis.
At one point, doctors even suspected an eating disorder, which was eventually debunked by her psychiatrist. That accusation prompted Tammie to post on Instagram:
“When they see a perfectly healthy teenage girl walk in complaining about being too nauseous to eat or it’s too painful to eat, the first thing that comes to their mind would be ‘oh yeah, she definitely has an eating disorder’. It’s not all in our head.”
This is one of the reasons why Tammie is telling her story.
“Not getting a proper diagnosis is scary and can be fatal,” she explains. “That’s why I’m raising awareness.”
Glimmer of light at the end of a long, dark, tunnel
Finally, after a series of scans, doctors were able to pin Tammie’s symptoms down to SMAS but continue to monitor Tammie for other underlying conditions.
Having suffered and being undiagnosed for so long, even doubting at one point whether she was really in pain, the diagnosis was a relief.
She shared in an emotional post: “It’s not that I’m happy getting one (a diagnosis), it’s that I’m actually getting answers and treatment. It’s been a tough journey.”
For now, as she cannot hold down any solid food, Tammie needs to be tube-fed to gain weight, which is the first line of treatment for SMAS. Weight gain can restore the mesenteric fat pad, changing the angle where it is positioned and prevent it from compressing the duodenum.
Watching her happily adorn her IV pole (where she hangs liquid meal packs) with Christmas decorations and nonchalantly setting up her feeds on TikTok , Tammie looks like she totally owns the feeding tube. But living with it can be challenging.
It is uncomfortable and can cause her throat to be dry and painful. She wakes up several times a night to flush her tube and refill her feed. She worries about getting it clogged and she is afraid she might accidentally pull it out. She brings her feeding pump, milk and bag everywhere.
People stare too.
“Sometimes I stare back,” laughs Tammie. “Although I walk around with a tube sticking out of my face, I have learned to adapt and live with it. It doesn’t bother me.”
The biggest challenge though, is the inability to participate in activities she loves most – dancing, specifically ballet and modern dance, running and badminton. She is a member of Strictly Dance Zone, her CCA at Singapore Polytechnic, where she studies.
“I feel like SMAS has stolen so much from me,” confides Tammie. “But then again, I am so grateful that I am able to receive treatment,” she says in the same breath. “I think everything happens for a reason. God will never give you something you cannot handle.
“This wasn’t how I planned out my life but what happened, happened and I can’t change anything, right? Instead of being sad about it, why not embrace it?
“I am just like any normal teenager and I have yet to experience so many things. At least I can still walk around and be “free” in a way.”
Finding strength from family, friends
Last month, Tammie received the go-ahead from her doctor to resume in-person classes at Singapore Polytechnic, where she will be completing her polytechnic foundation programme in a few weeks.
@tammieongg after a term long of hospital admissions, i’m finally able to go back to school😭❤️ #backtoschool #back2school #feedingtubeawareness #foryou #school ♬ Afterglow – Ed Sheeran
After being away for a term, she was stoked, she says.
“I missed interacting with my friends, chatting with them. I’ve always enjoyed learning, so not being able to have the energy to be in school really broke me.”
While she was recuperating, Tammie’s lecturers set up Zoom classes just for her. Now that she is back, her school community is nothing but supportive.
As she sometimes gets dizzy spells, her friends make sure that there is always someone with her. She even jokes that she lets them flush her feeding tube on occasion as they enjoy doing it!
Her parents take her to school and back.
“Ahh…I love them so much,” gushes Tammie. “I am forever so grateful for my parents, friends and lecturers. Not forgetting the community I have on social media, too. Everyone has been so supportive. Knowing that I am not alone in this really keeps me going.”
Finding the joys in her situation
Sometimes, it’s the little things that matter the most. For Tammie, it was in the form of pretty tube accessories such as clips, tape and port covers, which helped her embrace the tube feeding equipment she had to learn to live with.
She shared that they give her a little encouragement to push on and she enjoys changing up different designs to suit her mood.
In fact, she has since set up an online business to sell them in Asia, so that buyers can avoid high shipping costs from the US, where the accessories are typically available.
She makes each product by hand, as sewing distracts her from her symptoms, which she experiences almost every day. She hopes the accessories bring as much joy to other feeding tube users as they have for her.
Despite having experienced her toughest year in 2021, Tammie is filled with gratitude and hope.
She has lent her voice to champion medical causes. For example, she posted that December was vascular compression syndrome awareness month and that this week (Feb 7 to 11) is feeding tube awareness week.
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She looks forward to starting her Diploma in Biomedical Science, a first step towards her dreams to become a doctor.
“My experience has motivated me even more to help people who have health challenges. I want them to know they are heard and not alone.”
The road ahead may seem long but Tammie knows she can count on the love and support of the people around her.
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She says: “SMAS can take so much out of you and it’s not an easy fix. If the current treatment doesn’t work, I might need surgery and even that may not work. I wouldn’t have made it through my hard days without my family and friends, both old and new. They have been such a blessing!
“I just know that one day I AM going to recover. I don’t know when or how long it will take but I know I will get there eventually!”
Fight on, Tammie!