By Josh Saunders
A cancer surviving toddler born with a giant double-sized tongue so large it could be seen in the ultrasound is hoping for reduction surgery to help him eat and talk.
Baker Roth, 16 months old, from Jenks, Oklahoma, was born with Beckwith Wiedemann Syndrome (BWS) a rare overgrowth disorder affects one in 14,000 births worldwide.
His large tongue could be spotted on pregnancy scans at 27 weeks, but initially doctors and the parents Farrah and Sean, 42 and 41, believed he was just being “cute”.
After he was born by emergency c-section eight weeks early, it was recognised that he had the syndrome as well other difficulties.
Baker would need surgeries to reinsert his kidney and intestines that grew outside his stomach and a trach fitted within his first month due to obstruction and him holding his breath.
After a cancerous mass was discovered on his tumour in June, he would undergo nearly five months of chemotherapy and resection to remove the deadly area.
Baker, who has been in remission since October and is believed to have racked more than $2million in medical bills, hopes to have surgery to reduce the size of his tongue.
The operation will prevent his jaw from being deformed by the overly wide muscle, to eat more than pureed foods and talk for the first time.
Mum-of-four Farrah said: “I always thought it was cute that he had his tongue sticking out in ultrasound scans, but realistically it was macroglossia caused by BWS.
“Not a lot of doctors are familiar with the syndrome and we just thought it was adorable, I even posted about how cute it was.
“After he was born one of the first thing the doctor said to my husband was ‘He has a really large tongue’, but there were no other signs of BWS apart from ear indentations in the lobes.
“I would say his tongue is double the size it should be, it’s a lot thicker than it is long.
“If he pulls his tongue in his mouth there is no room in there, so it’s constantly poking out and stays hanging over his bottom lip.
“Tongue reduction surgery will allow him to make sound and communicate, as well as being able to eat more.
“He loves food and wants everything everyone else has so that will be the biggest thing, he will be so excited.
“Until his lips can touch, he will not be able to speak, and currently the only way he can communicate is when gets mad because he learned to scream over his trach.
“It’s been a wild ride, thinking of everything Baker has been through is amazing, children are so resilient.
“He’s a two-million-dollar baby, I haven’t been able to open the bills to look at anything yet, I’ve been anxiously waiting for the reduction.”
It was quite a shock for Farrah, who until being told by doctors that she was six-weeks pregnant believed she had a stomach virus.
The couple who have been together since they were 15-years-old, described little Roth as a “surprise with some extras” after being born at 32 weeks, weighing 7lb 14oz.
Ultrasound scans had revealed a mass on his stomach, from where the intestines and kidney had grown outside of his tummy – requiring three surgeries within his first week of life.
Farrah said: “In the meantime, for some reason he kept holding his breath, not due to his long tongue but because he had a little temper.
“When he didn’t like something, he would hold his breath until he passed out, at a month old it was decided he needed a trach.”
Roth was diagnosed with Beckwith Wiedemann Syndrome (BWS) – which caused his overgrown tongue known as macroglossia, in addition to a 90% chance of childhood cancer.
Regular blood tests and scans would reveal a mass in his liver, called a hepatoblastoma, six months ago.
The ultra-rare cancer that affects two in a million people required chemotherapy and surgery to remove part of the infected organ.
Farrah said: “I was never afraid that he would die, I took it day by day and went into a different mental mode.
“We were so relieved to find out that Baker was in remission, it was a heavy weight lifted, but unfortunately in the back of your head you always think it can return.
“It will be exciting to explain to him where his scars came from when he gets older, BWS kids seem to be very happy and strong little fighters.”
Now the family are fixated on getting his tongue reduced so he can live a more ordinary life.
While few people have seen him out in public, due to chemotherapy compromising his immune system, those who have notice his unusual tongue.
Farrah said: “His nieces and nephews often ask why he is sticking his tongue out at them, and in a couple of instances elderly people say, ‘Aw, look he’s sticking his tongue out’.
“Most people just think it’s cute and don’t ask questions, so I just smile and thank them.
“His siblings get a little protective and his dad is the same way.
“We call him the bubble baby as I’ve not been able to take him out a lot due to surgeries and chemo, I’m so scared of him getting sick.”
The family fear his escalating medical bills following the surgeries and treatments to keep him alive.
They are currently fundraising to help cover the costs.
Farrah said: “There are all of his medications, co-pays, trips to specialists and the unpaid medical leave I’ll need to take.
“We are in our 40s and have this anxiety knowing we have all of this medical debt building to have to settle eventually.”
Despite their financial concerns they are upbeat, hoping their son will be able to have a more normal life next year, with plans to reduce the tongue in January and remove his trach.
They say seeing 16-month-old son’s courage has spurred them on, even creating a Facebook page ‘Baker Strong’ to document his battles.
Farrah added: “Baker is always so happy and determined to learn new things, he loves people and to be outside when he can.
“He is a little hot head though, especially if he’s hungry, he has a little attitude but he’s been a great baby and it amazes us how well he’s done to battle through everything so far.”