ILARIA

Age of 8

General data on the case:

  • Biographical and case identification data – Ilaria is the only daughter of a young hearing family from Bucharest. She is a much wanted and awaited child with no family history of hearing impairment.
  • Case history (Anamnesis):

– Significant medical data – Ilaria was born at full term by caesarian section after a normal pregnancy, with no complications or health issues. At birth, she received an APGAR score of 10. Even though the universal neonatal hearing screening was available at the hospital she was born, it was not performed on her, presumably because the child seemed in perfectly good health.

The first time it was suspected that Ilaria had hearing issues was at the age of 6 months old. Her grandparents noticed she did not react to sounds the same way other children her age did. It was a difficult and emotional situation for Ilaria’s mother who, at the time, felt like her communication with her daughter was perfect. After seeing an ENT, who performed an old-fashioned clapping test, they were told the child did not have a hearing problem. Their relief was unfortunately short-lived because 6 months later, at the age of 12 months, Ilaria was yet to speak a word. This worried her parents and they decided it was time to see another doctor.

After some audiometric testing, at 13 months, they received the diagnosis of profound congenital bilateral neuro-sensorial deafness (hearing loss over 90 dB). At 14 months, Ilaria started wearing bilateral hearing aids with no improvements so it was decided that a cochlear implant was her best option.

Ilaria received her first CI when she was 16 months old and her second CI about a year later, at 2 years and 8 months old.

  • Significant psychological data – Ilaria is an exceptionally sociable and bright child. She is passionate about drawing, theatre, and gymnastics. Ilaria is highly creative and enjoys playing board games. With the help of a speech therapist and a good support network at home, she developed particularly good speech and spoken language.

Ever since she was diagnosed, her parents insisted on treating her as a normal child, never making her feel different from her peers. This positive attitude along with her spoken language progress made it easier for her to socially integrate.

According to her teachers, Ilaria is one of the best students in her class, having no trouble keeping up with her classmates.

  • Educational setting: At the age of 17 months, Ilaria’s first implant was activated, and right away she started seeing a speech therapist once a week. During the first couple of years after receiving the first implant, most of the rehabilitation process took place at home, mainly with her mother, who eventually became a speech therapist herself.

Ilaria started going to a regular kindergarten at the age of 3 years and 7 months when she was able to speak in full sentences. By then she was able to efficiently communicate with her peers and later tell her parents about the day’s events. Initially, she went on a short program until the age of 5 and then switched to a long program.

Her parents chose to postpone her entry to school for one year for the simple reason that she did not hear until the age of one and a half. In a couple of weeks, she will finish her first year of primary school as one of the brightest students in her class.

Significant social data: Ilaria comes from a moderate-income family. They are 3 people living in a 3-bedroom apartment. Mihaela, her mother, has a bachelor’s degree in Sociology and Social Work, and a master’s degree in Speech Therapy. She chose to give up her job for a while and get fully involved in the auditory-verbal rehabilitation process. She resumed her activity when the child turned 5 and currently, she works as a speech therapist. Ilaria’s father studied Management at ASE and currently works at an audit corporation.

  • Age of fitting the first hearing aids and cochlear implants: Ilaria received bilateral hearing aids right after being diagnosed at 14 months but showed no improvement. At 16 months Ilaria received her first CI which was fitted one month later. The fitting went well, without any issues. She did not wear a hearing aid on the opposite ear before receiving the second CI because it did not seem efficient. At 2 years and 8 months of age, she received her second CI and was fitted a month later. The second fitting went just as well as the first one.
– How often and what kind of support/rehabilitation does the child/family receive?

After the first CI was activated, Ilaria and her mother started going to group speech therapy once a week. The group consisted of three children and their parents. There, the parents were constantly educated on how to support their CI children and stimulate spoken language.

The implantation

  • age when undergoing first cochlear implantation (left or right side): 16 months, right side
    • type of implant: On her right side – Concerto implant with an Opus 2 processor until the age of 8 and a Sonnet 2 afterwards. On her left side – a Synchrony implant model with a Sonnet 1 processor.
    • number of implants (CI and hearing aids): CI1 16 months, CI2 2 years and 8 months
– current average duration of the CI use (information from the audiologists): 14 hours/day
  • other relevant information: No issues/difficulties were reported in using the devices.

What is the procedure for starting speech therapy after CI?

The importance of speech therapy and rehabilitation is discussed with the parents before implantation. There is no official rehabilitation program, so it is up to the parents to choose a speech therapist. Unfortunately, there are very few speech therapists with CI experience so sometimes it can be an accessibility issue.

The Speech Therapy used in rehabilitation

Ilaria went to a CI-focused speech therapist once a week for an 80-90 min session. It was group therapy consisting of 3 children and their parents. The therapy was only based on verbal-oral communication and training the parents in the process of auditory-verbal rehabilitation.

Very soon after the first fitting, she started reacting to speech sounds and by the age of 3 years and 8 months, she was able to comprehend speech as well as speak in full sentences herself. Outside therapy, her parents would vocalize absolutely everything that was going on around her. They would ask her questions and teach her to verbalize her answers.

Ilaria never learned or used sign language or lip-reading. She received regular audiological support and adjustments.

Results

SWOT analysis by Ilaria’s mother

Strengths: Ilaria benefitted from quality speech therapy based on parent training. The fact that she received her first cochlear implant at a young age – 1 year and 4 months – increased her chances at living a normal life.

Her parents always treated her like a normal child, without denying her disability. They always thought that she could do all the things that a hearing child could do and never set limits for her. They always encouraged her to try new things, always supported her, and worked on increasing her self-confidence.

Weaknesses: Ilaria’s case evolved with little to no setbacks. The most difficult part was accepting the diagnosis and coming to terms with the situation. In the beginning, her parents felt an overwhelming amount of pressure to do the best they possibly could. In time, however, they learned to also enjoy the moment and enjoy their daughter’s childhood.

Opportunities: Over the years, Ilaria and her mother got to spend quality time together, play, do all kinds of activities, read, talk, listen to music, dance and sing. They traveled to various places in order to expose her to as many experiences as possible.

They wanted her to be in touch with other hearing-impaired children like her so she would not feel different. They went to camps for deaf children, as well as other various events and parties for deaf children. This way she saw that there are many other children like her and she did not seem to be bothered by the fact that she was born without the ability to hear.

Threats: They have had little to no negative experiences during the rehabilitation process. Ilaria had an incredibly good team (parents-speech therapist -audiologist) helping her every step of the way. Her parents have a highly positive outlook on her future and are confident her life will in no way be hampered by her deafness.

SWOT analysis by Ilaria

Strengths: Ilaria appreciates being able to hear her teachers and friends, go to school and learn new things along with her peers. She enjoys listening to music and playing board games with her friends and family.

Weaknesses: Ilaria does not see any part of her experience as a weakness. Sometimes she can have trouble comprehending what others are saying, but it is exceptionally rare, and she is not afraid to ask for a repeat or a clarification.

Opportunities: She likes having the opportunity to tell her friends about her experience, even showing them the external part of her implant and explaining to them how it helps her hear like everyone else. She enjoys being able to take off the device at night and sleeping in complete silence. Sometimes, she likes being able to take the device off during arguments (her mother does not agree). One of her favorite experiences was going to camp with other deaf children.

Threats: At the age of 8, Ilaria does not see any part of her experience as negative. She has always had supportive teachers and friends, who have never made her feel in any way different or less than others. Her parents have always made her feel like a normal child and encouraged her to be as confident and self- assured as possible.

Video 1 – 1 year auditory age and 2 years and 5 months chronological age

Video 2 – 2 years VA and 3 and a half years VC

Video 3 – EX DICTION -4 years and 11 months VC and 3 and a half years VA

Video 4 – Kindergarten celebration 5 years and 3 months VC