A cancer surviving infant born with an unusually large tongue needs surgery to eat and speak.
16-year-old Baker Roth was born with the Beckwith Wiedemann Syndrome (BWS), a rare, excessive growth disorder that affects all body parts.
The disease, which affects one in every 14,000 births worldwide, meant its double In 27-week gestational scans, a large tongue was detected.
The parents of Doctors and Baker, Farrah and Sean, 42 and 41, from Jenks, Oklahoma, believed that he would only expose them as "cute".
But after being born to an emergency doctor eight weeks earlier, doctors recognized that he was suffering from this condition, leading to his overgrown tongue, the so-called macroglossia, and many other problems.
In addition to his five surgical procedures on his organs, Baker needed months of chemotherapy to remove a cancerous mass on his liver that his family believes has paid nearly $ 2 million in medical bills.
The toddler has been in remission since October, but now the family wishes their child to lead a normal life, hoping to raise money for future tongue reduction.
Baker Roth, 16 months old, from Jenks, Oklahoma, born with the Beckwith Wiedemann Syndrome (BWS), a rare overgrowth disorder that can lead to growth deficiency overgrown tongue
His double tongue was detected in 27-week gestational scans. The doctors and parents, Farrah and Sean, 42 and 41, believed he would only expose it as "cute."
The operation prevents his jaw from being deformed due to the strain on his too wide tongue, which also allows him to eat more than pureed food and conversation for the first time.
Mother of four women said, "I always thought it was sweet that his tongue stood out in ultrasound images, but realistically it was macroglossia.
"Not many doctors are familiar with the syndrome, and we thought it was adorable, and I even wrote how cute it was."
The symptoms of BWS vary from individual to individual but may affect the tongue, abdominal organs, skin near the ears, kidneys and height.
"After he was born, the doctor said to my husband first," He has a really big tongue, "said Mrs. Roth.
" I would say his tongue is twice as tall as she should be, she is much thicker than tall.
"When he pulls his tongue into his mouth, there is no space to constantly thrust out and hang over his lower lip."
Mr. and Mrs. Roth, the they were shocked when they found out they were pregnant, but Mrs. Roth had a stomach virus for six weeks.
.Mr. Roth was shocked when she found out she was six weeks pregnant was because she thought she had a virus.
With tongue reduction, Baker can make, communicate and eat sound.
WHAT IS BECKWITH-WIEDEMANN SYNDROME?
Beckwith-Wiedemann syndrome is a congenital over-congestion disorder that can affect all parts of the body.
BWS is a rare genetic disease affecting approximately 1300 births worldwide.
The number is likely to be higher in reality, with mild cases rarely diagnosed.
Typically, a child born to BWS has an enlarged tongue that can cause respiratory, nutritional and speech disorders, as well as excessive dribbling. It can also cause respiratory problems and lead to a protruding mandible.
Some children with this condition are born with an opening in the abdominal wall (an omphalocele) through which the abdominal organs protrude through the navel.
] Children with this condition are also likely to suffer from enlarged abdominal organs, excessive body growth, liver tumors, and increased heart or heart defects.
Source: National Institutes of Health
Baker was born at the age of 32 weeks and weighed 7 pounds 14 ounces. He needed three operations in the first week of his life.
The doctors had to reinstate his kidneys and viscera that grew outside of his abdomen.
He also needed a breathing tube – a breathing tube that was attached in his first month due to constipation and he held his breath.
Mrs. Roth said: For some reason he held his breath, not because of his long tongue.
"If he did not like something, he held his breath until he fainted when he was a month old, he decided he needed a trach."
Children with ESPE are at increased risk for various types of tumors, which, according to the National Library of Medicine, develop in about 10 percent of people.
In July, one of his regular blood tests and scans showed a mass in his liver called hepatoblastoma.
The rare cancer that affects about every 500,000 sufferers required chemotherapy and a surgical procedure to remove part of the infected organ.
Ms. Roth said, "I was never afraid that he would die, I took it day after day and went into another mental mode."
"We were so relieved that Baker was in remission was a heavy weight that was lifted by us, but unfortunately you always fear it could come back. & # 39;
Ms. Roth added, "He's a two-million-dollar baby, I could not open the bills yet to have a look, I was looking forward to the reduction."
Baker's family believes his medical bills will increase to nearly two million dollars because he also needed five rounds of chemo for a cancerous mass in his liver called hepatoblastoma. 19659056] In his first week, doctors had to operate three times on Baker. He had to use his kidneys and guts again as they grew out of his belly and caused a mass. He needed a trach in his first month because he held his breath and fainted. ” class=”blkBorder img-share” />
In his first week, the doctors had to undergo surgery with Baker three times. He had to use his kidneys and guts again as they grew out of his belly and caused a mass. He needed a trach in his first month because he held his breath and fainted.
& # 39; Through tongue reduction, he can make sounds and communicate and eat more.
& # 39; He loves food and wants everything that everyone else has, so it will be the greatest, he will be so excited.
"Until his lips can touch, he will not be able to speak, and currently he can only communicate when he comes crazy, because he has learned how to scream over his trach.
While few people have seen him in public for chemo that affects his immune system, those who notice his unusual tongue have said so.
Mrs. Roth said, "His nieces and nephews often ask, why he is sticking out their tongues, and in some cases older people say, "Aw, you see, he sticks out his tongue."
"Most people find it sweet and not questions, so I smile and thank them. His siblings get a little protection, and his father is in the same way.
"We call him our bubble baby, because I could not bring him out often because of surgery and chemo. I'm so scared of him getting sick.
The couple described the little Baker as a "surprise with some extras."
Ms. Roth added, "It was a wild ride, but to think of everything Baker has been through is amazing, the children are so resilient.
"It will be exciting to explain to him where his scars came from as he grew older, the BWS children seem to be very happy and strong little fighters."
Now the family is fixated on reducing his tongue He can lead a normal life and collect donations to cover the cost of his constantly escalating medical bills following the surgeries and treatments to keep him alive.