Deafblind Triplet Daughters

Now That's a Parenting Challenge

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 every day 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 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. 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.

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

About: What educational approach is being used?
Liz and George: They are being educated with an oral and sign approach. We sign and say everything within their routine. We hope to mainstream in the future but I believe the girls will always have some sort of interpreter in school.

Daughters Play Little

About: How do they play with other children?
Liz and George: They don't really play with other children. Very rarely do they play with each other. Sophie will laugh and become excited when she sees her sisters trying something new, but that's about it. They eat off each other's plate, steal one another's cups and pillows... I mean they are definitely aware of one another but that's about it.

Parents Challenged Daily

About: What is life like with deafblind triplets?
Liz and George: Twenty-four hours of hard work. Blind kids don't sleep well, so I rarely get a full night's sleep. We are working on table manners but spills are frequent so we are constantly sweeping and mopping. Two of my triplets are not potty trained so we go through quite a lot of diapers. I'm constantly on watch to make sure they don't fall down the stair or run into something. They can't tell me if something hurts, how they're feeling, or if they need a cuddle. 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

About: What is a typical day with your triplets like?

Morning

Liz and George: 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

In the afternoon at home, we have private therapists (OT, PT, ST) four days out of the week. We try to take them outside if the weather is nice. The younger kids in the neighborhood will often stop by and say hello. I try to have the house cleared out by 7 p.m. so we can eat like a family.

Dinner

They are pretty good at picking up the utensils; they just tend to throw it down after taking a bite. Sophie will eat anything that you let her dip into ketchup. We take our time eating dinner.

Bedtime

About 8:30 p.m. they take a bath together. They LOVE their bath, which is a good thing because they really need it after supper. We put them in their jammies and 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, we will spend a lot of time outside. I have a small trampoline, and rocking horse. I'll get some play doh out or some other toys. I then rotate their activities every hour like a circuit course.

Big Sister Helps

About: Does Sarah help? In what way?
Liz and George: 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

About: Is it any easier to raise deafblind children today compared to Helen Keller? Compared to a decade ago?
Liz and George: I thing the technology of hearing aids and cochlear implants definitely gives deafblind children more access to their environment.

But we don't have an Annie Sullivan, someone willing to devote her entire life to a deafblind person. I don't know that we'll find three special people like Ms.

Sullivan in this day and age. 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. I think Helen Keller's success raised the bar. And that's a good thing.

Need for Intervenors

The Hookers are seeking funds to pay for intervenors for their children. What is an intervenor? According to the Hookers' website at Not By Sight Fund, it means someone like Annie Sullivan, who worked with the young Helen Keller. The double whammy of deafness and blindness is that developing adequate language is dependent on the help of an intervenor. Deafblind children must be taught how to do everything.

Update: On February 28, 2007, the Hookers were featured on the Dr. Phil show. Towards the end of the program, Dr. Phil surprised them with the news that an intervenor is going to work with the children for two years. Fundraising is still necessary to cover intervenor help after that.

In February 2008, Reader's Digest had an online feature article, "Hope for Deaf-Blind Triplets -- Light in the Dark," that described life for the triplets at age seven.

Continue Reading