“We’ve never heard him cry or speak. (…) I dream of the day [of] hearing his voice, his cry, [and when] he will be able to eat all of the food he wants,” she mentioned to Fox News.
The 16-month-old toddler Baker Roth from Jenks, Oklahoma, has been through so many horrible things at such a young age. After he was diagnosed with a birth defect and childhood cancer, doctors then discovered another major medical issue: his tongue.
Shortly after he was born, the little boy was in need of surgery in order to fix a birth defect that can cause the organs to stick outside of the belly, called omphalocele. Parts of his intestines and kidney were already growing outside of Baker’s body. Luckily, that initial surgery went well – but Baker definitely wasn’t out of the woods just yet.
Shortly after, doctors discovered a cancerous tumor on his liver.
Baker’s cancer, medically known as hepatoblastoma, required treatment immediately. The toddler then underwent several intense and exhausting chemo rounds, which were able to drive the cancerous tumor into remission three months later.
With his cancer in remission, the parents hoped that Baker would finally be able to start living a healthy life – but the baby’s unusually large tongue became a serious issue.
On ultrasounds before birth, doctors thought that Baker’s large tongue was ‘just cute’.
They didn’t realize that Baker could be dealing with the very rare Beckwith-Wiedemann syndrome, which causes overgrowth of certain body parts such as the tongue. The condition is extremely rare and only affects one in every fourteen thousand births. When his tongue started to cause breathing issues, doctors knew that they needed to intervene.
This poor boy has stayed more at the hospital than home, and now parents are hoping that his remarkably large tongue – which is estimated to be twice that of a normal tongue – can be remedied by surgery. To make things even worse, Baker’s parents were told that his tumor markers have increased once again, which could be a bad sign of cancer returning. In other words, Baker still had a very long way to go.
“Unfortunately we got that phone call you don’t want to get after getting our labs done last week,” mom Farrah wrote. “We are believing that it could possibly be liver regeneration causing Baker’s tumor marker to go up more than it should.”
As of right now, the priority is to try and resolve Baker’s tongue because of the many severe issues it causes.
For example, Baker can’t speak clearly due to the size of his tongue blocking his airways. He also can’t eat anything solid and has to breathe through a tube down his throat. If a tongue reduction would be successful, doctors and Baker’s parents hope that he’ll finally be able to breathe independently again.
Even though the tongue reduction will be first, there are still plenty of more surgeries and medical procedures ahead for the poor and incredibly brave Baker.
“We still have a tongue reduction in January, hospitalization to have the trach removed, mickey button removal [feeding tube] and one last abdominal surgery in the near future,” mom said.
With these countless surgeries, astronomically expensive medicine, chemotherapy and other costs, the Baker family fears that they will rack up to no less than 2 million dollars in debt. They’ve started a GoFundMe crowdfunding page shortly after he was born with a target set of $15,000. As of right now, almost two hundred people donated to raise a total of a little over $12,000.
Even though the future still has plenty of hurdles, the Roth family isn’t giving up and is remaining hopeful.
“We are so appreciative of all of our family and friends — some we know, and some whom we don’t know — for seeing us through this difficult time of our lives,” Farrah told. “There is a light at the end of the tunnel, however we still have a little ways to go. Baker is strong as ever.”
Mom and dad feel extremely blessed due to the overwhelming support they’ve gotten.
Thanks to the help of friends, family, the community and random strangers from the internet, mom Farrah and dad Sean will be able to remain by Baker’s side during his procedures. They’re already looking into the best possible ways to treat the possibly returning cancers, and Baker still has to go additional abdominal surgery for the repair to his birth defect.
Mom Farrah currently only has one wish:
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