Teen dancer defies deadly ‘tentacle-like’ tumours that are crushing her organs and swelling her limbs to abnormal proportions
A teen dancer is defying deadly ‘tentacle-like’ tumours that are crushing her organs and swelling her limbs to abnormal proportions.
Bria Baumann, 14, from Lumberton in Texas, USA, has the ultra-rare condition CLOVES syndrome that causes malformations to form anywhere in her body – affecting only 200 people worldwide.
At 18-weeks pregnant, Doctors advised mum Sophia to have an abortion after spotting growths on the baby’s neck and chest during a sonogram, believing she wouldn’t survive.
When Bria was born she looked like a ‘conjoined twin’ due to the two-and-a-half-pound masses that hung down past her diaper.
At 20-days-old, she went under the knife for her first operation to debulk the masses and went onto have a further 38 surgeries to stop her tumours from killing her.
The tentacle-like malformations have collapsed her left lung and are compressing her heart, left kidney, some tendons and joints.
As well as having ten times more veins than normal people, that are extremely delicate – these venous malformations are delicate and could rupture causing her to bleed to death at any moment.
Despite this, the brave teen is an avid dancer proudly performing with through the pain even though her one hand is frozen at a 90-degree-angle.
Sophia, 44, a full-time parent, said: “While I was having a sonogram, you could see my daughter had a growth on her neck and chest.
“When Bria was born at 34 weeks she weighed 7lb 5oz but doctors estimated the tumours were two and a half pounds of that
“There was a huge one underneath her left arm and chest, it looked like a heart hanging down past her diaper.
“Her arm became massive because of the malformations, it’s remarkable how wonderful she looks compared to how she looked at birth.
“If she doesn’t have the malformations cut out they will stop the use of her arm, joints and could mangle her left arm, without surgery she would have needed an amputation.
“The tumours wrap around her like tentacles, it’s puts a lot of pressure on her heart and major organs, even collapsing her left lung.
“The large mass within her chest kept squeezing and pressing on her lung until it deflated, she only has function in the right lung.
“Now the masses are pressing on her other organs like her heart and are taking over her entire body.
“Then the venous malformation is the part of CLOVES Syndrome that means the swellings can bleed to death, she’s not allowed to take part in sports because of the risk.
“She has always been in pain but she is such a tough kid and not the kind to complain if she’s struggling, she just works through it.
“The main problem is because she didn’t have surgery last year her left hand has swollen and her fingers and wrist are frozen at a 90-degree angle.
“She is extremely brave and doesn’t talk about the pain, she keeps fighting and uses her passion for dance, choir and other hobbies to help her fight back against her condition.”
After Bria was born, doctors hooked her up to a heart monitor and kept her in NICU, awaiting surgery at 20 days old to start debulking the masses on her body.
Sophia said: “She didn’t leave the hospital before her first surgery, which was to shrink the tumours underneath her arm and neck.
“Because it was so large there wasn’t a lot they could do with it, they tried an experimental drug which did help to shrink it but other babies died from it so she was lucky.
“When she was a baby she couldn’t even drink a bottle without exhausting herself, she had to be fed by an NG tube that was put down her nose for six months because it was overwhelming her heart.”
Bria had to seek out specialists in Boston to continue treatment after her surgeries were deemed too complicated, beyond the hospital’s capability and nearly killed her.
She would go onto have a further 38 combined surgeries and procedures to try to reduce the masses and manage the syndrome – she will need surgeries for the rest of her life.
Sophia said: “She almost died on the table at 14-months-old, that’s when we were told she was beyond the hospital’s capabilities and we needed to be seen by a world-renowned specialist and surgeon.
“They were working on a lymphatic malformation on her neck at the time, when they touched a venous malformation and it blew up like a volcano.
“They then had to cut from the back of her neck to the front of her chest to open up her heart to restart it by hand and stop the bleeding that would save her life.
“She is a very difficult surgical case but thankfully due to the surgeons in Boston she looks great compared to the malformations were before, Boston did such a great job on her.”
CLOVES is an extremely rare progressive overgrowth syndrome that causes a variety of medical problems.
It stands for Congenital Lipomatous Overgrowth, Vascular malformations, Epidermal nevi and Scoliosis, skeletal or spinal anomalies
Due to the overgrowth of Bria’s arm, shoulder and scars, she often contends with stares and comments from strangers.
Sophia said: “When people ask her about the scars, they often believe she was in a car accident, she just explains that this is how God made her and that she’s had a lot of surgeries.
“Ever since she was a baby I’ve told her she’s beautiful and smart, which I believe has shaped her into the positive young woman she is today.”
Her friends and family have worked hard to empower her, this encouragement made Bria want to enter a beauty pageant that she would go on to win in two categories.
Sophia added: “When she won the beauty contest she really worked her dress, the stage and the crowd.
“She’s so photogenic and was a real show-woman out there, you can see her beauty inside and out.”
CLOVES continues to affect the majority of Bria’s body, from crushing her organs to swelling her limbs, twisting them out of position and affecting her mobility.
Bria’s family are fundraising for her ongoing care and due to Sophia being a single mum she has been unable to afford the surgeries that will prevent her condition from worsening.
Sophia said: “We rely on the kindness of stranger to help pay for her surgeries, if we don’t stay on top of her CLOVES with surgeries she will gets progressively worse and could die.
“The syndrome causes excess growth of bone, soft tissue, swollen veins, abnormal blood vessels and malformed lymphatic vessels.
“She is having so many different problems from her left hand, fingers and wrist freezing up, caused by her not having surgery last year.
“Also, one of her legs is almost an inch longer than the other, to remedy this, surgeons will have to break her leg and cut her growth plate to stop it from growing once it’s a little larger.
“There’s no cure for CLOVES Syndrome, Bria will always have surgeries for the rest of her life.”
To donate visit: www.gofundme.com/slmb2
Do you, or someone you know, have a similar story to tell? Get in touch today to earn £££ and raise awareness.