Minnesota parents are overjoyed to finally be hearing their three-year-old daughter’s voice for the first time.
Zoey Ellis, of Coon Rapids, was born in March 2015 with an extremely rare disorder that blocked off her windpipe and left her unable to speak.
For the past three years, Zoey used sign language, squeaks and clicking her tongue to communicate with her parents, Amberlee and Jeremy.
This past summer, doctors in Ohio approved Zoey for a surgery that would widen her windpipe using cartilage from her rib cage so she could speak.
Now, not only is Zoey surviving and thriving, she’s speaking. In an interview with DailyMail.com, her mother described the heartbreak of thinking her daughter would never say a word and the overwhelming joy of hearing ‘Mama’ and ‘Dada’ for the first time.
Zoey Ellis, three (left and right), was born in March 2015 with a rare disorder known as CHAOS, or Congenital High Airway Obstruction Syndrome. It is a condition in which her windpipe was blocked and voice box was fused while she was in utero, leaving her unable to speak
When doctors first told Zoey’s parents, Amberlee and Jeremy, about the condition, they said she had no chance of survival. Pictured: Zoey as a newborn
‘I was 20 weeks pregnant and we went in to find out she was a girl,’ Amberlee told DailyMail.com
‘They told me over the phone they thought she had a disorder, but they were going to have to send me to a specialist.’
Zoey was diagnosed with CHAOS, or Congenital High Airway Obstruction Syndrome, a rare disorder in which a fetus’s windpipe and voice box are blocked.
Scientists are unsure of what causes it, but believe it may be from the airway being narrowed or part of the trachea is missing, according to UCSF Benioff Children’s Hospital.
Fetuses with the disorder have enlarged lungs, fluid in their stomaches and potential heart failure due to airway obstruction.
Treatment depends on how severe the condition is. If the blockage is minimal, minor surgery is needed to correct it.
If the blockage is severe, babies need a trach tube – a breathing tube placed through directly into the windpipe – inserted after birth and several surgeries to correct the condition.
According to Benioff Children’s Hospital, in extreme cases such as where the swelling of the lungs could damage the heart, doctors may perform surgery before birth.
‘Every doctor we saw said she had no chance of survival,’ Amberlee said.
Of the 50 cases that have been reported since 1989, doctors told her that only seven had survived.
‘They told me she would need surgery right when she was born, she would have no quality after she was born,’ Amberlee said. ‘I was just devastated.’
Amberlee and Jeremy were prepared to go visit specialists out of state at Children’s Hospital of Philadelphia when a doctor from Minneapolis reached out to the couple and asked to talk to them.
Right before Zoey was delivered, doctors inserted a trach tube so she could breathe. However, she was unable to make any noises. Pictured: Zoey in the hospital
Zoey (left and right) couldn’t laugh, cry or say any words. Additionally, having the trach tube meant Amberlee and Jeremy had to suction the airway hundreds of times a day
He told the Ellises he would make sure Zoey was monitored each week so she would have the best chance of survival.
Amberlee said her pregnancy had been so difficult, with constant nausea and vomiting, and she had fought to make sure her daughter lived.
‘We fought so hard together through the pregnancy that, to me, we were both kind of in it together,’ Amberlee said.
In March 2015, when Amberlee was 36 weeks pregnant, she was put under anesthesia.
Doctors paused the delivery, pulled Zoey’s head and shoulders out and inserted a trach tube so she could breathe outside of the womb, and then finished delivery her.
Zoey couldn’t laugh, cry or say any words – and having the trach tube meant Amberlee and Jeremy had to suction the airway hundreds of times a day to clear fluid out.
‘I knew going into it that it was a possibility,’ Amberlee said. ‘The picture [doctors] painted for me was so horrible that I was kind of prepared for everything.’
After months of research, Amberlee and Jeremy found a program at Cincinnati Children’s Hospital in Ohio, which specializes in airway reconstruction surgery that would repair Zoey’s blockage.
After being tested and evaluated in July, surgery was scheduled for November.
In July, Zoey was approved for surgery at Cincinnati Children’s Hospital in Ohio. The procedure involved cutting Zoey’s windpipe and widening it using pieces of cartilage from her rib cage as a graft. Pictured: Zoey with mom Amberlee and dad Jeremy
In mid-December, Zoey (left and right) began saying ‘Mama’ and ‘Dada’. She is currently in speech therapy and will be able to attend pre-school in the fall
Surgeons cut Zoey’s windpipe and widened it using pieces of cartilage from her rib cage as a graft, according to the GoFundMe page.
None of this was covered by insurance – but her parents had some help, including one fundraiser that raised nearly $50,000.
Amberlee said it was a long road to recovery but, in December, Zoey began laughing and crying. In mid-December, she began saying ‘Mama’ and ‘Dada’.
‘It still just makes me cry. It’s something I never knew I wanted so much,’ said Amberlee.
Zoey is currently in speech therapy, but her mother encourages her to still use her sign language along with her words.
Amberlee says Zoey had a six-year-old’s level of vocabulary in sign language so she doesn’t want her daughter to lose that.
The toddler will also need regular check-ups every month or so at Children’s Minnesota in Minneapolis and at least one more surgery to close the skin where her trach used to be.
However, Zoey will now be able to attend pre-school in the fall instead of being home-schooled.
Amberlee said she hopes her daughter’s difficult – yet incredible – journey inspires hope in others.
‘The biggest thing is not to give up even when you think the worst is possible,’ she said.
A family friend started a GoFundMe page to help the Ellises raise money to cover the costs of the surgery.
So far, they’ve raised more than $10,200 out of a $20,000 goal.