Win­dow to a world of sound

For new­borns with hear­ing loss, early screen­ing can lead to quick in­ter­ven­tion

Orlando Sentinel - - HEALTH & FITNESS - Story and Pho­tos by Rachel Bluth

Four-year-old Betty Schot­tler starts each morn­ing with the same six sounds: (m), (ah), (oo), (ee), (sh) and (s).

Her mom makes the sounds first, then Betty re­peats them to check that her cochlear im­plant is work­ing.

Betty was born pro­foundly deaf and got her first set of glit­tery rain­bow hear­ing aids at 6 weeks old. Then, be­fore her 1st birth­day, she had surgery to place a cochlear im­plant in the bone behind her ear. The de­vice sends sig­nals to the brain, and the brain rec­og­nizes those sig­nals as sound.

For Betty and thou­sands of chil­dren born in the U.S. with a hear­ing im­pair­ment, new­born screen­ing is the first step to­ward in­tro­duc­ing them to the world of sound.

Most ba­bies in the U.S. get screened in the first few days af­ter birth; in 2016, up to 98% of new­borns were tested, ac­cord­ing to the Cen­ters for Dis­ease Con­trol and Pre­ven­tion.

Typ­i­cally, a hear­ing screener comes to the mother’s bed­side and tests the baby in the bassinet. It works best when the child and the en­vi­ron­ment are quiet.

“A lot of times we swad­dle the baby so that the baby is com­fort­able and can sleep, put the probe in the ear and that test doesn’t take more than five to seven min­utes per ear,” said Irene Sideris, a pe­di­atric audiologis­t with Chil­dren’s Na­tional Hos­pi­tal, which is based in Wash­ing­ton, D.C.

The tiny probe looks like an ear­bud or in­fant ther­mome­ter. It emits a low click­ing noise, which stim­u­lates tiny hairs in the baby’s in­ner ear and makes them vi­brate. The test mea­sures the echoes from those vi­bra­tions, or otoa­cous­tic emis­sions.

Most ba­bies pass, and that’s the end of their test­ing.

Oth­ers new­borns get “re­ferred,” mean­ing the doc­tor rec­om­mends they be screened again as soon as pos­si­ble, usu­ally within days or weeks.

New­born Betty Schot­tler didn’t pass.

“They told us that she ‘re­ferred.’ They say re­ferred in­stead of fail,” said her mom, Jen Schot­tler.

Sideris said a baby might not pass the ini­tial hear­ing screen­ing for many rea­sons, in­clud­ing resid­ual fluid or de­bris in the ears.

The CDC es­ti­mates 1.7% of ba­bies were re­ferred for ad­di­tional screen­ing in 2016. Hear­ing loss is the most com­mon con­gen­i­tal con­di­tion in the U.S. Three in 1,000 in­fants are born with it, ac­cord­ing to the Amer­i­can Academy of Pe­di­atrics.

When the hear­ing screener came to test Betty, Jen Schot­tler said the whole thing hap­pened quickly.

“New­borns get screen­ings for a mil­lion things, and it’s one of them,” Schot­tler said. “I just re­mem­ber re­ceiv­ing the piece of pa­per with the re­sults and the list of au­di­ol­o­gists to reach out to.”

Fol­low-up tests showed that Betty has pro­found hear­ing loss and was, there­fore, a can­di­date for the cochlear im­plant. Trained as a speech pathol­o­gist, Schot­tler knew that if she wanted Betty to start hear­ing and learn­ing spo­ken lan­guage, the clock was tick­ing.

Other par­ents choose to have their child learn sign lan­guage or other ways of com­mu­ni­cat­ing.

“Ev­ery fam­ily’s dif­fer­ent,” Schot­tler said.

In 2000, the fed­eral gov­ern­ment set a goal to have all chil­dren screened in the first month of life and to have kids with hear­ing loss iden­ti­fied and di­ag­nosed by their third month. The gov­ern­ment’s goal is to get kids en­rolled in early in­ter­ven­tion pro­grams by the time they’re 6 months old.

Be­fore screen­ings were so univer­sal, Sideris said, par­ents of­ten did not re­al­ize their child had prob­lems hear­ing un­til age 2 or 3. “At that point, the child has al­ready lost two years of speech­language learn­ing time,” Sideris said.

For par­ents who want their kids ex­posed to sound, ex­perts say early in­ter­ven­tion is ur­gent.

“That doesn’t mean that if you are 4, 5 or 10 and you have a hear­ing loss that you would not ben­e­fit from hear­ing aids,” Sideris said. “But the ear­lier that you are iden­ti­fied, the eas­ier it is.”

The Schot­tlers, who live in Ar­ling­ton, Vir­ginia, con­nected with a lo­cal parent-in­fant ed­u­ca­tion pro­gram and bor­rowed loaner hear­ing aids for baby Betty be­fore she got her cochlear im­plants.

Early in­ter­ven­tion was a fam­ily af­fair for the Schot­tlers. Speech ther­a­pists came to the Schot­tlers’ home to teach the fam­ily how to help Betty start ac­quir­ing spo­ken­lan­guage skills.

In the be­gin­ning, Jen and her hus­band, Brian, did all sorts of things to draw Betty’s at­ten­tion to sounds. They’d look for sub­tle signs — like a blink or a raised eye­brow — that she had reg­is­tered the noise. In the early days, it took Betty’s big sis­ter, El­lie, bang­ing on a toy drum to cap­ture the new­born’s at­ten­tion.

“Oh, you heard that?” They’d ask her. “I heard that too. I won­der what it was?”

Later, she would re­act even when a drop of wa­ter siz­zled softly on the cof­fee maker’s hot plate.

To­day, Betty loves to color. She’s al­ready read­ing some of El­lie’s books from kinder­garten and is of­ten a leader when play­ing with friends. She’s a preschoole­r with plenty to say.

Betty Schot­tler, mid­dle, was born with hear­ing loss. It took Betty’s big sis­ter, El­lie, left, bang­ing on a toy drum to get her at­ten­tion. Now Betty hears with the help of a cochlear im­plant.

Betty Schot­tler holds part of her cochlear im­plant. The de­vice sends sig­nals to the brain, and the brain rec­og­nizes those sig­nals as sound.

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