When their baby barely ever sleeps, these parents sense something is wrong and discover their child has this curious disease
Posted July 19
You’ll often hear expecting couples joking that once their child is born they’ll never get a good night’s rest again. It’s true that some babies have a hard time adjusting to sleeping routines, waking up exhausted parents continuously through the night. But what would you do if your baby literally never slept more than two hours each night?
According to KYOUTV, a little girl from Canada can survive with around 90 minutes of sleep per night. It seems impossible, but her rare medical condition causes severe sleep disorders, among other symptoms.
An incomplete diagnosis
When sweet baby Ever was born, everything seemed fine at first. But then Ever began to suffer from gastroesophageal reflux (GERD), which happens when the stomach acids rise to the throat and make eating difficult.
Her parents, Robin Audette and Kirk Hisko, thought this was the reason why their little girl slept so little at night. However, when the medication began to take effect and baby Ever still did not sleep all night, they began to fear that something more serious was going on.
They knew something had to be wrong
Even though Ever barely slept, she was an energetic and happy child. But her parents couldn’t brush away their concern when they noticed there were nights when their baby slept only an hour. Her worried parents were also concerned because their baby was missing milestones. They wondered if it was caused by her GERD or "if something else was going on", Audette said in a video interview.
The two brought their daughter from specialist to specialist before finally getting a proper diagnosis.
By the time Ever's parents had an accurate diagnosis of her illness, she was already 2 years old. The medical condition that Ever suffers is called Angelman Syndrome, a rare neuro-genetic disorder that occurs in one in 12,000 to 20,000 live births. Characteristics of the disorder include developmental delay, lack of speech, sleep disorders, seizures, as well as walking and balance disorders.
Sleep-deprived but happy parents
Audette and Hisko were happy to finally get the whole truth about Ever, but they still find it very challenging to care for a daughter with such an irregular sleep schedule. They take turns staying up with her in shifts throughout the night.
“If we can get anywhere from four to six hours out of her in a night, we feel like we’ve done good,” the parents said.
Even though both parents can get pretty sleepy during the day, Audette and Hisko assert that they feel happy to have their happy daughter in their lives.
Pay attention to these symptoms
Like Ever's parents, you can help diagnose your child if you feel something is wrong. Noticing certain symptoms may hint at this genetic disorder:
- Developmental delays, including no crawling or babbling at 6 to 12 months
- Intellectual disability
- No speech or minimal speech
- Difficulty walking, moving or balancing well
- Frequent smiling and laughter
- Happy, excitable personality
- Irregular sleeping patterns
The next time you wake up at night because your baby is crying, think of parents whose children only sleep an hour at a time. Are you grateful your child sleeps more than a few hours?
Fernanda Gonzalez Casafús es argentina, mamá y Licenciada en Periodismo. Ama los animales, la danza, la lectura y la vida en familia. Escribir sobre la familia y la maternidad se ha convertido en su pasión. Contacto: firstname.lastname@example.org