Piper

My little girl, Piper, was born profoundly deaf in both ears for reasons unknown. Her loss was identified at a newborn hearing-screening program at Methodist Medical Center, where she was born. Let me back up a bit and give you the details leading up to Piper’s birth and diagnosis….

Piper has a brother, Wyatt, 18 months older and my first child. After a wonderful pregnancy, Wyatt had a horribly traumatic birth, spending 10 days in NICU. He was hospitalized 6 times by his 1st birthday with various GI & respiratory problems. Countless tests, doctors, 2 minor surgeries, etc. encompassed his first year, and then when he was 9 months old, I got pregnant again. WOW! Talk about shock! Not only was I not prepared for a pregnancy with everything going on with Wyatt; I wasn’t prepared for a “problem” pregnancy. 4 months into the pregnancy, a sonogram showed that Piper only had 2 vessels in her umbilical cord instead of the usual 3. There was a list of problems associated with 2 vessel pregnancies, including heart deformities, kidney deformities, and cleft palate, not to mention low birth weight. Just what I needed. We went for level 3 sonograms every 3-4 weeks for the remainder of the pregnancy. At 39 weeks, I was induced and labor was swift (12 hours). Piper came into the world and passed every test we had been worried about with flying colors! It seemed everything was normal… sigh… what a relief! So, when she didn’t pass her hearing screening, I wasn’t worried. The nurses told me that lots of babies “refer” due to fluid in their ears from delivery, and I believed them.

We went to see a local audiologist at 4 weeks and had an OAE test done. This audi told me that it looked like Piper had normal hearing in her right ear and some loss in her left, but she wanted to re-test her in 2 weeks. OKAY, I can handle that. Maybe some slight speech issues, maybe a hearing aid, okay… we’ve handled worse. At 6 weeks, we returned for a second test. This time I was told she had normal hearing in her left ear and some loss in the right – WHAT? I left the office without even so much as a good-bye. Did this woman even know what she was doing? I was so confused – how could her hearing be doing that? Thankfully I have a best friend since childhood who was an audiologist & she said, “get an ABR”. Before I could get an ABR scheduled, Piper landed in the PICU at the Children’s Hospital with a pertussis (whooping cough) infection at 8 weeks old. She was in critical condition and isolation for 5 days. Then spent another 5 days admitted before she came home. She came home with on oxygen and had an apnea monitor for 4 months afterward. Before discharge, however, I persuaded the hospital to do an ABR there. They complied and I was hit head-on – Piper was profoundly deaf. NO, not the baby who I fought with the nurse to have a sound machine in her isolation room. Not the baby who I’d played music to in the womb for 5 months. Not the baby who’s father plays guitar. I can’t tell you how much I cried. The next month was a blur. I remember calling my mom from Piper’s hospital room and in a shaky voice telling her, “I need you to bring Wyatt. I need to hold him – NOW.” I needed to be grounded in what seemed like a swirling tidal wave. Funny how the child who’d been through so much and had been so sick just months earlier, was now my source of strength and stability.

So here we were. We’d gone from partial loss in one ear to profoundly deaf. Another ABR at 15 weeks confirmed it, and Piper started seeing her wonderful audiology team in Champaign, IL (90 miles from our house). We started to learn sign language, slowly though. Piper got her first hearing aids at 5 months and started speech therapy once per week. Speech therapy for a baby? It hardly seemed real. It quickly became evident that the hearing aids weren’t giving her much sound, and booth testing showed she got no speech at all. She was communicating purely through sign. So, now we were facing another decision – raise her signing and deaf, or raise her hearing and deaf. Confused? So was I! Piper was a candidate for a cochlear implant.

After much consideration and testing, we proceeded and she was implanted at 13 months and activated at 14 months. I always say that my decision to implant her was mostly based on this picture I had of her in my head as soon as I found out she was profoundly deaf at 9 weeks old. I imagined her around age 15 at McDonald's with her friends ordering her food. Simple thought, I know, but important was there was no interpreter in my mind. I wanted her to be independent. BUT, at the same time it wasn’t up to me to change this child, so I felt it important that she still know she was deaf, would always be deaf, and I wasn’t trying to change that about her. I was scared that an implant wouldn’t let her fit into the deaf or hearing world. I feared that in giving her independence, I would be isolating her too. Looking back, although it’s not even been a year at this writing, I don’t think isolation is even an issue. Maybe it will be someday, and it will be my responsibility to teach her to effectively deal with that, but I pray that won’t be a bridge we have to cross.

Piper has made incredible progress. She is nearly age equivalent in both receptive and expressive language, measuring spoken words only. We are now only 9 months post implant and Piper has a spoken vocabulary of about 80 words! Not all of them are clear and with perfect enunciation, but she still isn't even 2 yet! (For example, clown is "cown", blue is "bu", blankie is "gankie", thank you is "an eww", but others like mommy, bubble, apple, and more are perfect). She understands much of what I say to her, probably close to 50 more words, without the use of any reinforcing sign language! We still use sign language secondarily in our home, but every family is different. She uses it for spoken words she doesn't know, and to clarify something if I don't understand her words. We chose to keep using it for times when she can't hear us like bath time, bedtime, and playing on slides or in water. I thought it was important for her to keep that part of her. She is starting to put two words together now as well like "more me", "open door”, and “go outside”.

This is not to say she hasn't done a lot of work!! She received auditory training & speech therapy 5 hours/week until recently when they've reduced her to 3 hours/week because of her great progress. She also sees a teacher of the deaf 1-hour a week, who does both auditory therapy & teaches her (& me) sign. Piper truly is amazing and continues to dazzle me everyday with her progress. We’ve even had strangers comment on how talkative she is, not even knowing that she’s hearing impaired! They were simply commenting on what they thought was a hearing toddler. We’ve also endured the rude stares and questions/comments. It’s not always easy, but it’s worth it.

I once read that “silence isn’t always golden, sometimes it’s just plain yellow.” Who wants their child's life to be just plain yellow?! I certainly didn’t. I remember attending Parent Infant Institute at the Illinois School for the Deaf last summer, before implantation. I sat in the midst of all these families from IL with hearing impaired children. The first night, I cried all night. Although our diagnosis wasn’t new and I thought I’d come to terms with it, it was hitting me that I didn’t want to be a part of these people. I didn’t want to “fit in” with them. I didn’t want to have anything in common with them. But the friendships I formed during that week have been some of the best. I cherish that common bond I’ve made with those parents & I find myself reaching out to newly diagnosed parents all the time, trying to help them however I can. That’s why I’m writing this – maybe you need me…

Tanya Simpson

Footnote: Piper has been affectionately named “the Bionic Baby” at our house. Summer of 2001, Piper began having vasovagal episodes and spent most of the summer in & out of the hospital (with everyone there thinking I was a crazy, overprotective mother). Anyway, by the grace of God & my persistence, an episode was caught on video & monitors, and she had emergency pacemaker insertion in September, which saved her life. She’s doing wonderfully with it as well.



	Piper My little girl, Piper, was born profoundly deaf in both ears for reasons unknown. Her loss was identified at a newborn hearing-screening program at Methodist Medical Center, where she was born. Let me back up a bit and give you the details leading up to Piper’s birth and diagnosis…. Piper has a brother, Wyatt, 18 months older and my first child. After a wonderful pregnancy, Wyatt had a horribly traumatic birth, spending 10 days in NICU. He was hospitalized 6 times by his 1st birthday with various GI & respiratory problems. Countless tests, doctors, 2 minor surgeries, etc. encompassed his first year, and then when he was 9 months old, I got pregnant again. WOW! Talk about shock! Not only was I not prepared for a pregnancy with everything going on with Wyatt; I wasn’t prepared for a “problem” pregnancy. 4 months into the pregnancy, a sonogram showed that Piper only had 2 vessels in her umbilical cord instead of the usual 3. There was a list of problems associated with 2 vessel pregnancies, including heart deformities, kidney deformities, and cleft palate, not to mention low birth weight. Just what I needed. We went for level 3 sonograms every 3-4 weeks for the remainder of the pregnancy. At 39 weeks, I was induced and labor was swift (12 hours). Piper came into the world and passed every test we had been worried about with flying colors! It seemed everything was normal… sigh… what a relief! So, when she didn’t pass her hearing screening, I wasn’t worried. The nurses told me that lots of babies “refer” due to fluid in their ears from delivery, and I believed them. We went to see a local audiologist at 4 weeks and had an OAE test done. This audi told me that it looked like Piper had normal hearing in her right ear and some loss in her left, but she wanted to re-test her in 2 weeks. OKAY, I can handle that. Maybe some slight speech issues, maybe a hearing aid, okay… we’ve handled worse. At 6 weeks, we returned for a second test. This time I was told she had normal hearing in her left ear and some loss in the right – WHAT? I left the office without even so much as a good-bye. Did this woman even know what she was doing? I was so confused – how could her hearing be doing that? Thankfully I have a best friend since childhood who was an audiologist & she said, “get an ABR”. Before I could get an ABR scheduled, Piper landed in the PICU at the Children’s Hospital with a pertussis (whooping cough) infection at 8 weeks old. She was in critical condition and isolation for 5 days. Then spent another 5 days admitted before she came home. She came home with on oxygen and had an apnea monitor for 4 months afterward. Before discharge, however, I persuaded the hospital to do an ABR there. They complied and I was hit head-on – Piper was profoundly deaf. NO, not the baby who I fought with the nurse to have a sound machine in her isolation room. Not the baby who I’d played music to in the womb for 5 months. Not the baby who’s father plays guitar. I can’t tell you how much I cried. The next month was a blur. I remember calling my mom from Piper’s hospital room and in a shaky voice telling her, “I need you to bring Wyatt. I need to hold him – NOW.” I needed to be grounded in what seemed like a swirling tidal wave. Funny how the child who’d been through so much and had been so sick just months earlier, was now my source of strength and stability. So here we were. We’d gone from partial loss in one ear to profoundly deaf. Another ABR at 15 weeks confirmed it, and Piper started seeing her wonderful audiology team in Champaign, IL (90 miles from our house). We started to learn sign language, slowly though. Piper got her first hearing aids at 5 months and started speech therapy once per week. Speech therapy for a baby? It hardly seemed real. It quickly became evident that the hearing aids weren’t giving her much sound, and booth testing showed she got no speech at all. She was communicating purely through sign. So, now we were facing another decision – raise her signing and deaf, or raise her hearing and deaf. Confused? So was I! Piper was a candidate for a cochlear implant. After much consideration and testing, we proceeded and she was implanted at 13 months and activated at 14 months. I always say that my decision to implant her was mostly based on this picture I had of her in my head as soon as I found out she was profoundly deaf at 9 weeks old. I imagined her around age 15 at McDonald's with her friends ordering her food. Simple thought, I know, but important was there was no interpreter in my mind. I wanted her to be independent. BUT, at the same time it wasn’t up to me to change this child, so I felt it important that she still know she was deaf, would always be deaf, and I wasn’t trying to change that about her. I was scared that an implant wouldn’t let her fit into the deaf or hearing world. I feared that in giving her independence, I would be isolating her too. Looking back, although it’s not even been a year at this writing, I don’t think isolation is even an issue. Maybe it will be someday, and it will be my responsibility to teach her to effectively deal with that, but I pray that won’t be a bridge we have to cross. Piper has made incredible progress. She is nearly age equivalent in both receptive and expressive language, measuring spoken words only. We are now only 9 months post implant and Piper has a spoken vocabulary of about 80 words! Not all of them are clear and with perfect enunciation, but she still isn't even 2 yet! (For example, clown is "cown", blue is "bu", blankie is "gankie", thank you is "an eww", but others like mommy, bubble, apple, and more are perfect). She understands much of what I say to her, probably close to 50 more words, without the use of any reinforcing sign language! We still use sign language secondarily in our home, but every family is different. She uses it for spoken words she doesn't know, and to clarify something if I don't understand her words. We chose to keep using it for times when she can't hear us like bath time, bedtime, and playing on slides or in water. I thought it was important for her to keep that part of her. She is starting to put two words together now as well like "more me", "open door”, and “go outside”. This is not to say she hasn't done a lot of work!! She received auditory training & speech therapy 5 hours/week until recently when they've reduced her to 3 hours/week because of her great progress. She also sees a teacher of the deaf 1-hour a week, who does both auditory therapy & teaches her (& me) sign. Piper truly is amazing and continues to dazzle me everyday with her progress. We’ve even had strangers comment on how talkative she is, not even knowing that she’s hearing impaired! They were simply commenting on what they thought was a hearing toddler. We’ve also endured the rude stares and questions/comments. It’s not always easy, but it’s worth it. I once read that “silence isn’t always golden, sometimes it’s just plain yellow.” Who wants their child's life to be just plain yellow?! I certainly didn’t. I remember attending Parent Infant Institute at the Illinois School for the Deaf last summer, before implantation. I sat in the midst of all these families from IL with hearing impaired children. The first night, I cried all night. Although our diagnosis wasn’t new and I thought I’d come to terms with it, it was hitting me that I didn’t want to be a part of these people. I didn’t want to “fit in” with them. I didn’t want to have anything in common with them. But the friendships I formed during that week have been some of the best. I cherish that common bond I’ve made with those parents & I find myself reaching out to newly diagnosed parents all the time, trying to help them however I can. That’s why I’m writing this – maybe you need me… Tanya Simpson Footnote: Piper has been affectionately named “the Bionic Baby” at our house. Summer of 2001, Piper began having vasovagal episodes and spent most of the summer in & out of the hospital (with everyone there thinking I was a crazy, overprotective mother). Anyway, by the grace of God & my persistence, an episode was caught on video & monitors, and she had emergency pacemaker insertion in September, which saved her life. She’s doing wonderfully with it as well.