The experience and testimony of a family serves as great insight into the support that we offer. HI HOPES has supported approximately 2000 families in our 1st decade, this number is increasing exponentially, as the awareness of the importance of Early Intervention is increasing, and as we extend into more provinces. These are the stories from both parents and interventionists’ perspectives of just some of our families. Pseudonyms have been used for confidentiality purposes. The stories have been shared from either the Home Interventionist’s or parent’s perspectives.
The first HI HOPES baby, Amy, was referred to us in September 2006 at three months of age.
“My daughter Amy was diagnosed shortly after birth with a hearing impairment and was fitted with hearing aids at three months. We were shocked, frightened and sad and had no idea who to turn to for support and help. We were put in touch with Claudine Storbeck at HI HOPES. What a journey it was for three years! We were given support and guidance, love, care and nurturing! We met amazing people from the Deaf community who showed us an insight into their world which made it easier for us to understand Amy’s.
HI HOPES gave us the tools to enable us to choose various forms of communication for Amy to learn both receptive and expressive language! We are now eight years into our journey with the most incredible and brave little girl who we delight in! I don’t know where we would have been without early intervention of HI HOPES. We will always be grateful and forever humbled by the work they do and the help and push they gave us to never give up hope and to always strive for great things! Thank You!”
Like Mbali, 29% of babies born deaf or hard of hearing have further developmental needs. Mbali was born prematurely at 27 weeks and weighed 800 grams and spent her first four months in ICU. Little Mbali was diagnosed with bilateral mild to moderate hearing loss and has worn her hearing aids full time since the age of one.
The family uses total communication to communicate with her and quickly developed a vocabulary of about 50 words and signs. In addition, Mbali was further diagnosed with cerebral palsy at 30 months after developing epileptic seizures. In spite of the challenges that she has faced in her early childhood years, Mbali is a happy little girl and delights in singing church hymns and nursery rhymes. She has learnt to speak in sentences that are clear and easy to understand.
Tia failed her first hearing screening test at two days old. She was referred for further testing, and her hearing loss was confirmed at six weeks of age. Both Tia’s parents are Deaf, but this did not make it any easier for them to accept Tia’s diagnosis and they went through the same emotions and struggles as hearing parents do; communication, amplification, education. What would be best for their precious daughter? Tia has an older sister who is hearing but who can also sign. The family uses South African Sign Language (SASL) as their first language.
Intervention from HI HOPES started when Tia was six weeks old. Tia started using a mixture of South African Sign Language, made up signs and gestures in order to communicate. An initial language delay was turned around to language seven months ahead of Tia’s chronological age after a year and a half of intervention.
Message of thanks to HI HOPES from Tia’s mother:
“Thank you to HI HOPES! You have changed our precious Tia’s life for a better future for her!”
Paige is the middle of three beautiful girls and there is no history of hearing loss on either side of the family. The cause of her hearing loss is unknown and she has no other developmental delays or medical problems.
Paige was born in London. OAE hearing screening was carried out at birth as part of the standard UK National Health Service system. She passed the screening and was not referred. The family suspected a hearing loss when Paige was 16 months and they took her to an ENT specialist who diagnosed middle ear infection and treated with antibiotics. At 21 months her hearing was tested as inconclusive and she had grommets inserted at 26 months. At 28 months it was again tested as inconclusive and was finally diagnosed at 30 months. By this time they had returned to SA and were under the care of a private audiologist.
Paige’s mom, was told about HI HOPES by a friend and contacted the programme through the HI HOPES website. Paige has a bilateral moderate sensorineural hearing loss. On meeting this family for the first time they were most welcoming and had many questions. They felt let down with the system and were desperate for information and support regarding choices for their child.
Interestingly this family were living in the UK at the time of initial testing and diagnosis, and even though they were part of a first world health care system, they felt they had been let down in terms of diagnosis and early intervention.
After the initial difficulties in accessing services for diagnosis and intervention, this family is very appreciative of the assistance provided by HI HOPES and very involved in Paige’s language development. Paige has started school and is doing very well.
Paige’s family have been so empowered through the support of HI HOPES, that they have been part of the active leadership of a parent support programme.
“I will not forget this amazing experience of bringing precious Mary into the world. Then the turning point, fear steadily gripped me over the next few months as doctors informed my husband and I that l had unknowingly contracted German Measles early in my pregnancy. As a result of this, our daughter was born with a cataract in her right eye, congenital heart defects, severe/profound hearing loss, as well as delayed physical development. To date, our daughter Mary has endured several heart procedures, an eye operation, countless medical examinations, and copes with wearing both spectacles and hearing aids… all before the age of two years!
My pain was personified in self-blame, the hours spent in waiting rooms on a weekly basis, the denial that this was not happening to my child. I remember the feelings of hopelessness, nothing in the world could have prepared me for this. Watching other babies learn to sit up on their own, crawl and mumble their first words while my little girl seemed to do nothing but lose weight. The frustration of not being able to communicate effectively, the lack of understanding or support of family members, the comments and judgment of strangers, it all just tore me apart emotionally.
In retrospect, my advice to any parent who finds themselves in a similar circumstance would be to come to terms with their situation as soon as possible. This will then enable you to start preparing for your new life of caring for your special and precious child and focusing on what is important for their growth and development. Acceptance of my situation made all the difference to my life. It was a key, much required ingredient for me to embark on the journey successfully as a mother. It equipped me with the strength and courage to accept that which was beyond my control. I daily grew to appreciate all the support and help that I received from HI HOPES. Through my renewed attitude I was able to see the beauty in life again.
During my journey a quote by Bob Marley resonated strongly with me, ‘You’ll never know how strong you are until being strong is your only choice.’”
Born 6 weeks premature, Bryce was prescribed Ototoxic drugs for an infection. His parents were not informed of possible side effects (hearing loss).
When Bryce was 4 months of age, his pediatrician referred him for a hearing test. The results showed that Bryce had a mild to moderate hearing loss in both ears. He was fitted with hearing aids and his audiologist referred the family to HI HOPES.
Our first priority was to establish a good relationship with the family, including the extended family. Bryce was the first grandchild and both the parents and the family was devastated by his deafness. No one on either side of the family had a hearing loss.
The HI HOPES interventionist started with ways to help the family come to terms with the loss of Bryce’s hearing, and support the parents emotionally. Once they accepted and understood the nature and implications of Bryce’s hearing difficulties, the family devoted themselves to his intervention.
The most important first step was to help them with getting Bryce to keep his hearing aids on so that he could maximize environmental sounds; Bryce proved most resistant! The HI HOPES modules about hearing aids, really assisted the family with this challenge.
Communication methods were discussed with the family. They were subsequently able to make informed choices, whilst following little Bryce’s unique needs.
A HI HOPES Deaf Mentor (DM) was introduced to the family. The DM acts as a role model for the Deaf child, whilst also exposing the parents to the Deaf world, by giving them the opportunity to ask questions about what it is like to be Deaf; about schooling and the work environment as a Deaf person.
The DM taught Bryce and his parents Sign Language, and now Bryce happily uses Sign Language alongside his oral communication skills. Bryce is doing really well and beginning to demonstrate the future possibilities of his intellectual and language potential as a result of the early input of the HI HOPES programme.
Tayla was born at 25 weeks, weighing only 585 grams, and spent the first four months of her life in an incubator.
She was diagnosed with a profound bilateral sensori-neural hearing loss at 2 months of age and amplification began at 6 months. However, Tayla was not wearing her hearing aids on a full-time basis. She found them uncomfortable and kept pulling them off. She was attending speech therapy on a weekly basis.
Tayla was referred to HI HOPES at 18 months of age. Our interventionist visited the family on a weekly basis, providing informational and emotional support to the family, as well as assistance with opening up communication between themselves and Tayla. A language assessment was carried out every 4 months to assess Tayla’s language development (both receptive and expressive language).
Topics covered by the interventionist in the home visits included:
- The three communication options (Spoken Language, Signed Language, SimComm) of which the family chose to use SimComm (signing and speaking);
- Hearing aids;
- Information on cochlear implants.
Tayla underwent surgery for a cochlear implant. She is responding well to the device and undergoes speech therapy twice a week.
Tayla used to get very excited when her Home Interventionist visited. She was always very receptive to gestures, signs, words and actions.
Tayla’s parents have worked hard towards her development and will continue to do so as they can see how Tayla is now responding and how her vocabulary is increasing on a daily basis.
Jordan was born through natural birth; her mom had no pregnancy or birth complications. But at 8 months of age, this little girl was diagnosed with a bilateral severe to profound hearing loss and possible Leopard Syndrome. She was referred to HI HOPES at 16 months, and after being in the programme for just under two years, she is now a successful HI HOPES graduate!
During the period of intervention, the interventionist spent time with the family discussing Jordan’s development and providing the family with support. Five language assessments were done over the intervention period.
This language assessment, known as the Language Development Scale (LDS), is used quarterly to monitor the language development (both receptive and expressive language) of infants and young children who are deaf or hard of hearing.
Eli lived in Makhazi Gav, a Rastafarian location in Philippi, Cape Town. As it is a Xhosa community his mother spoke English and his older sister spoke Xhosa and English.
He was diagnosed with a hearing loss after having Pneumococcal Meningitis, a bacterial infection that his mother had no knowledge about. As most parents, when they hear that their child has a challenge, they tend to blame themselves, so time was spent regularly dealing with various topics around grief, which the family found very helpful.
Because of his disability, he had very low muscle tone and their house was not conducive for him to crawl or play on the floor, mom would keep him on the bed most of the time.
Mom applied for the social grant and was happy that she received it and could buy food, clothes and fix the house for him to enjoy.
On arrival for a home visit, the interventionist found mom out of breath and unable to open the gate to let her in. The interventionist assisted in getting mom the necessary medical attention. She was admitted immediately and a week later she passed away. This was a shock to all who knew her and a worry who will care for Eli as the father was not around.
But God is faithful; mom’s brother and his wife were thinking of having another baby and took Eli. Immediately Eli was in a happy family, with other new siblings. Eli went for therapy to develop his low muscle tone and can now crawl on hands and knees. He speaks very loudly and loves to eat. He would stand at the gate and call the neighbours by their names when passing by.
Eli has transitioned out of the programme and now attending school. He has made so much progress and the guardians are pleased with the support from HI HOPES. We wish him well with his future.
“He who has a ‘why’ to live can bear almost anyhow.” – Friedrich Nietzsche
“I was 22 weeks pregnant when I went into labour with my twins. I was privileged to have had dedicated team of doctors and nurses who did everything possible to hold off the birth. I remained in hospital under strict bedrest for the following three week until our baby boy became engaged, necessitating an emergency C-section. There were two teams of surgeons and nurses in theatre that day, ready to start working on each baby as they were born.
My babies were born at 25 weeks gestation. Their birth weights were 880g and 740g proving that they are our true miracles. Although my son was not breathing on his own when he was born, he proved to be a tenacious little warrior. He was weaned off life-support after 9 days. Lisa, his (really little) sister was having issues of her own. She stopped breathing on her own after 10 days in NICU because she had a hole in her heart. A second tenacious little warrior emerged, she was weaned off life support after 4 days and she then went on to not only breathing on her own, but over the next two months she would also drink from a bottle despite a massive hole in her heart. Lisa underwent heart surgery at the age of 3 months, weighing a mere 2.4kg. The definition of feeling traumatised and helpless at the same time is being an NICU mummy to twins who experienced everything from lung infections, jaundice, low iron and apnoea attacks almost every 15 minutes – being twins they would take turns, as a consideration to their poor mummy and daddy’s hearts.
In August 2012, at 3 months of age, and a whopping 1.9kg our tenacious warrior # 1 came home. His little sister was released from hospital a month later, under instruction to be taken to immediately to Johannesburg to undergo heart surgery. Our tenacious warrior #2 (aka Twin 2) recovered after 10 days in hospital and only Panado to ease her pain. We felt we had dodged a hundred bullets the day we had them both home.
Tahir had failed his newborn hearing screening several times before we took him in for an ABR at 5 months of age. He was diagnosed with a profound hearing loss in both ears and he was fitted with hearing aids in both ears very shortly after his diagnosis. During that same period, he was also diagnosed with cerebral palsy – as we had noticed that he was not holding his head up and sitting up as his twin sister was. We are doing everything in our control to understand Tahir’s diagnosis and facilitate early developmental intervention. Sacrifices had to be made, I have changed my fulltime job to half-days. There were periods of time when we almost forgot that he was a deaf child, because we just needed him to drink his milk, as he struggled to gain weight…other challenges took the spot light. We attended regular audiology testing and speech therapy. Lisa started to sign with Makaton before she said her first words. I realised at once, that Tahir & Lisa were going to make a formidable team. While Lisa was chatting away in her own little language, Tahir did not verbalise at all, not even babbling. The decision to opt for a cochlear implant did not come easily – we researched, and sought advice from where-ever we could, and eventually he received his first implant. Although it was a bit traumatising – because he cried uncontrollably, I cried as well, but these were happy tears, when later that evening when he was rolling on his bed, cooing, testing out the sound of his voice and giggling when his Dad called him from behind! You could say that he’s adapted beautifully to having a cochlear implant and his new-found access to sound, he shows recognition to sounds and a few words and he responds and verbalises with babbling. We have a long way to go still, but the journey is full of phenomenal promise for both our tenacious little warriors.”
Rachael was diagnosed with profound hearing loss at the age of 18 months.
A HI HOPES early interventionist was assigned to support the family with weekly visits. On the Interventions’ (HI) first visit the whole family and neighbours were present to hear of how HI HOPES would support them. They were happy that will be taught how to communicate with Rachael. At the time Rachael communicated by pointing and using her finger to indicate what she wanted, and if was she was not happy, she’d get very frustrated
The family and neighbours looked forward to the home visits and participated in the session, and always had lots of questions. It was a very productive and helpful year of intervention, providing unbiased information and supporting the family. Rachael later had a Cochlear Implant, and is doing very well.