Life With Deafblind Triplet Daughters at Age 5

Now That's a Parenting Challenge

Emma
Emma. © Liz and George Hooker

Emma, Sophie, and Zoe Dunn are triplets born premature in 2000. They are deaf from ototoxic drugs and blind due to the retinopathy of prematurity, but they had no cognitive impairments beyond developmental delay. When the girls were turning 5 years old, their parents discussed their life as a family living with these challenges. Here is their story according to mother Liz and stepfather George Hooker.

Triplets Lose Eyesight

Emma, Sophie, and Zoe Dunn were born premature, at 25 weeks. Sophie weighed 1 pound 3 ounce, Zoe weighed 1 pound 6 ounces, and Emma weighed 1 pound 5 ounce. All three became blind from complications related to Retinopathy of Prematurity (ROP). By the time the girls were two months old, they had developed ROP. Sophie is legally blind. She sees colors and shapes and she also has tunnel vision. Zoe sees enough light to find the windows. Emma sees nothing.

Triplets Lose Hearing

They lost their hearing due to vancomycin and gentamicin antibiotics that were administered when throughout their time in the NICU. The drugs were used to treat suspected sepsis. The two drugs when used together increase the ototoxicity of the other.

They nearly completely lost their hearing when they were about 20 months old.  Until that time they had made significant progress and were about to start walking.

They were saying words such as cup and mama. But out of the blue they simply curled up on the floor in a fetal position and began to be carsick due to vertigo. The ototoxic drugs damaged the hair cells on the cochlea, which in turn causes deafness. They also destroy the vestibular hairs. Due to the vestibular damage, the girls were experiencing severe vertigo and could no longer hold their heads up.

"They also became mistrustful during this time. They all got real clingy and wouldn't roughhouse anymore. They would get scared when you picked them up off the floor, they always seemed to be on edge. It took three more years for them to recover and begin walking again and resolve their angry behavior."

Daughters Receive Implants

When the triplets were two years old, they received cochlear implants. At nearly age 5, Sophie was at a 22-month-old level of language while Zoe and Emma were about 10 months in language development. They all had the Nucleus 24 cochlear implant. They hear most speech sounds.

"The reason Sophie is so much more advanced is that she is legally blind rather than totally blind. Your vision helps give meaning to sound. For example, if you hear a squeaking sound and then see a swinging door then you can associate the two. Say someone is talking while the door is squeaking, you can then determine that the door is unimportant and tune it out, and listen more to the person talking."

"In a room right now, one might hear the ceiling fan, air conditioning vent, dryer, radio, cars outside, and still carry on a conversation. Through normal childhood development, you learn to filter sounds and determine which sounds are important at different times.

The challenge with Zoe and Emma is that they see through their fingers."

The parents help them distinguish sounds with exercises about whatever they are touching. To help them tune out the background noise, they take them to the air-conditioning vent and let them hear the noise as they feel the air coming from it, let them touch the dryer as it tumbles the clothes. It becomes more difficult when they are touching different things at the same time.

In summary, the expectation is that all the girls have the tools to talk; we just have to help them sort out their world first.

Daughters Get Educated

The triplets are being educated with an oral and sign approach.

The parents sign and say everything within their routine. They hope to mainstream them in the future but believe the girls will always use an interpreter in school.

Daughters Play Little

At this point in their lives, the triplets didn't really play with other children and only rarely played with each other. Sophie will laugh and become excited when she sees her sisters trying something new, but that's about it. They are aware of each other and eat off each other's plate, steal one another's cups and pillows, but that was about it.

Parents Challenged Daily

Liz and George say that each day is 24 hours of hard work. Blind kids don't sleep well, so they rarely get a full night's sleep. Mealtimes mean frequent spills and cleaning. Two of them were not yet potty trained. They need watching to prevent trips and falls, especially since they can't tell their parents if something hurts or how they are feeling. "In those ways, it's a lot like having infants. I worry a lot about meeting all of their needs. It's quite a bit of guesswork. There are good parts. too. Those first steps were like watching them win the marathon. They work so hard for every little gain. The highs are higher and the lows are bottomless."

"Having deafblind triplets is going to bed every night and knowing that I didn't do enough. The odds are stacked against me. There is no way for me to give them everything they need. Sometimes I wish that if it was my fate to have three deafblind children that I could have them five years apart just so I could give each of them all they need in these developmental years. We're not quitters though and we are making slow but steady progress. I just pray that God will fill in the gaps where I couldn't."

Parents' Typical Day

  • Morning: "I wake up about 7 a.m. and test their cochlear implants and put their batteries in their packs. Then I wake the girls by rubbing their backs. I help dress them and change their diapers. I walk them into the bathroom and help them brush their teeth and then fix their hair. I walk them downstairs one by one and put them at the kitchen table where they get breakfast. "After breakfast, I give them their canes and walk them out the bus stop. They go to school Monday through Friday for most of the day. I have my own business that I do from our home while they are gone. The girls are in their own classroom and they have one teacher and two paraprofessionals. They take the girls through a [learning process] that concentrates on routine."
  • Afternoon: Private therapists (OT, PT, ST) visit four days out of the week. They go outside if the weather is nice. The younger kids in the neighborhood often stop by. They have the house cleared out by 7 p.m. so they can eat like a family.
  • Dinner: They take their time eating dinner. The girls are able to pick up their utensils, but tend to just throw them down after taking a bite.
  • Bedtime: They take a bath together at about 8:30 p.m., which they love. They go to bed about 9 p.m. Emma usually stays up until midnight and then Zoe wakes up at about 3:30 a.m.
  • Weekends: On weekends, they spend a lot of time outside. They have a small trampoline, rocking horse, and other toys. The parents rotate their activities every hour like a circuit course.

Big Sister Helps

The Hookers have an older daughter, Sarah. "We call Sarah the invisible child. She stays away from the commotion most of the time. We encourage her to play with her sisters. When we take all of the kids somewhere, she helps guide one of them. She fetches diapers, cups, and little things they need. She helps me watch them at the park. She likes to fix their hair too."

Parenting Deafblind Easier

Comparing raising deafblind children to the days of Helen Keller, the technology of hearing aids and cochlear implants definitely gives deafblind children more access to their environment. The parents say, "Helen Keller's life proved that deafblind people can learn and contribute to society. That's made a huge difference in how the girls are educated."

Need for Interveners

The Hookers sought funds to pay for interveners for their children. An intervener is someone like Annie Sullivan, who worked with the young Helen Keller. Developing adequate language with deafblindness is dependent on the help of an intervener.

The family was featured on the "Dr. Phil" show in 2007 and 2010. They were able to set up a foundation and raise funding to cover an intervener, although they had difficulty finding one after a couple of years due to immigration issues. They have been the topic of a couple of documentaries, including "Deaf and Blind Triplets."

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