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Deafblind Triplet Daughters

Now That's a Parenting Challenge

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Updated April 24, 2011

Emma

Emma

© Liz and George Hooker
When I received an e-mail from Liz and George Hooker, parents of deafblind triplet daughters (deaf from ototoxic drugs, blind from prematurity), I knew I just had to feature this family on About. As one of the parents put it:

"As you know, deafblindness is a low incidence disability. I know of a set of 7-year-old blind triplets in California and a set of 20-year-old deaf triplets in the Midwest, but I believe we have the only set of deafblind triplets."

At the time this article was written in 2005, their deafblind triplet daughters were close to turning 5 years old. Liz said, "We're lucky that the girls don't have any cognitive impairments beyond developmental delay. We work very hard everyday to push them along. It is most overwhelming though, because I know I'm outnumbered to perform the task at hand. I still have big dreams for them though."

Daughters Lose Eyesight

About: How old were they when you found out about the Retinopathy of Prematurity (ROP)? Do they have any sight at all?
Liz and George: Emma, Sophie, and Zoe were born premature, at 25 weeks. Sophie weighed 1 pound 3 oz., Zoe weighed 1 pound 6 oz., and Emma weighed 1 pound 5 oz. 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. I didn't know they were blind until they were almost six months old. Sophie is legally blind, she sees colors and shapes, she also has tunnel vision. Zoe sees enough light to find the windows. Emma sees nothing.

Daughters Lose Hearing

About: How did they lose their hearing and how old were they?
Liz and George: They lost their hearing due to vancomyacin 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 ototoxicicity of the other.

They nearly completely lost their hearing when they were about 20 months old. It was a very difficult time for me because I didn't know what was wrong with them. The girls made significant progress their first year. They were about to start walking... they were saying "cup" and "mama"... then out of the blue they curled up on the floor in the fetal position. Every time I drove them in the car they would throw up; my happy babies became angry and began to bang their heads on the floor.

I took them to the doctor thinking that their stomachs hurt, I had no idea they were losing their hearing. The reason they were curled up on the floor is because ototoxic drugs damage the hair cells on the cochlea which in turn causes deafness, in addition 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 has taken three more years for them to recover and begin walking again. Most of the angry behavior is gone too. But the deafness was a huge setback for us. I hate to think of that time because I wonder if they thought I had just quit talking to them.

Daughters Receive Implants

When the triplets were two years old, they received cochlear implants.

About: How much benefit are the girls getting from the implants at this time?
Liz and George: Sophie is at a 22-month-old level of language while Zoe and Emma are about 10 months in language development. They all have the Nucleus 24 cochlear implant. They hear most speech sounds. The reason Sophie is so much more advanced is that she is legally 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. So we must talk about whatever they are touching to help make sense of their world.

To help them tune out the background noise we have to 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. These are all great exercises to help them distinguish sound. What makes it more difficult is when Zoe and Emma are touching different things. If I say "Zoe, your eggs are lumpy and hot," while Emma is eating ice cream, then Emma may associate lumpy and hot with ice cream. You can see how it gets more difficult from here.

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