Payton Taylor Peters was born on 21 February 2012 via C-Section. Payton has always been an easy, happy child. Having an older brother at pre-school, Payton always caught whatever virus was going around the school from her brother, but nothing was ever serious.
Payton reached all the milestones without anyone ever having to be concerned that there was a problem. At 8 months she started crawling, by the time she was 11 months she was walking by herself. She started speaking a few words just after her first birthday in February 2013.
In May 2013 Payton caught a bad upper respiratory infection. In June, we noticed that she stopped speaking her few words and no longer responded to us when we called her. She went for two checkups in July and August at the pediatrician, where we were told that if she didn’t start speaking by the time she was two, we should then take her to an Ear, Nose and Throat specialist.
Having an older sibling and a mother’s gut feel that something was not right, I made her an appointment at the specialist anyway. A week before her specialist appointment, Payton had such bad ear infection that her left ear drum burst. At the appointment we were told that Payton had very bad “glue ear” and would need grommets to help drain her ears and that this was probably the reason she couldn’t hear.
Hoping that this was the case, Payton went into hospital for the first time ever to get grommets and her adenoids removed. She was an absolute champion throughout the procedure and everything was a success. We were told that we would see amazing changes in her after the operation.
At her check-up a week after the operation, I mentioned to the specialist that we had not seen the amazing changes that were mentioned. We were told that sometime’s grommets take a while to start working properly and to give them some more time. Three checkups later, four weeks down the line and after much persistence from us, the specialist finally referred to us to an audiologist for more testing.
After waiting 7 weeks for the audiologist appointment, the day finally came to have Payton tested to see if she had a hearing problem. Unfortunately we were not told that Payton had to be asleep for some of the tests and failing to get her to sleep while at the appointment, the tests had to be rescheduled.
Two months later and six attempts at the test, one where she slept for half the test, one when she slept throughout the test and one when she was put under anesthetic for the test, we had received three different results and were no closer to finding out what was wrong with Payton, We were referred for a second opinion at another audiologist whose machine is more advanced.
We waited another 8 weeks for this appointment. Payton went in on 28 February 2014, was sedated and after 4 hours of testing, the results were conclusive – Payton has severe bilateral hearing loss. The extent of hearing loss has four ranges – mild, moderate, severe and profound. We were heartbroken!
Having to deal with the facts and what was in front of us, we were given our options. With the severity of Payton’s hearing loss, hearing aids may not work. She has to go on a three month trial with the hearing aids while she attends extensive speech therapy to see if they help. After three months, if her speech does not start to develop it will mean the hearing aids are not working and cochlear implants will then be the next option.
Payton is currently in her fist month with the trial hearing aids. We are having faith that they will work but we need to prepare in case they don’t work and with medical aid not covering any of the expenses we are now having to raise all the funds ourselves for her continuous audiologist appointments, tests every six months, speech therapy and of course either the hearing aids or the cochlear implants.
We have been told that the hearing aids can cost anything between R24 000 and R60 000. Cochlear implants can cost up to R600 000 after all the doctor fees and other fees associated with the implants. Speech therapy will be ongoing well into her school career if not throughout her school career.
We however continue to stay positive and keep the faith which has not been difficult with the happy little girl that Payton is and how well she is adjusting to everything going on with her. Support from family, friends and people we didn’t even know before this all happened has been overwhelming and definitely restored out faith in human nature.
UPDATE: 24-05-2014: We found out this past week that hearing aids are unfortunately not working for Payton. Payton is now scheduled for an MRI and CT scan to see if she qualifies for cochlear implants. Should she qualify, we will need to raise the R750 000 for her to get them. The doctors would like to do at least one cochlear implant in the next two months so that it can be switched on before she is 2.5 years old.
UPDATE: 31-05-2014: A bit of good news - Payton has both auditory nerves and cochlear's which means they can go ahead with the cochlear implants. She has been preliminarily booked in for the operation on 22 July 2014.
UPDATE: 23-07-2014: Payton went in for her bilateral cochlear implant surgery yesterday at the Union Hospital. After a 5 hour operation, both her internal devices are now in. We now wait three weeks for recovery and then she will get the first sound processor and will slowly get introduced to sound and the first ear trained to recognise sounds. Once the one ear is used to sounds they will then fit the second sound processor and train the second ear to recognise sounds. We still have a long way to go but the worst part is now over. Payton is a real trooper and if she didn't have bandages on her head, you would never have thought she had gone in for an operation yesterday. We do however still have a lot of funds to come up with as now we need to pay R118 000 over in two weeks time and another R89 000 over in three months time. We are so grateful for all the continuous support we have been receiving. We have been truly blessed.
UPDATE: 26-08-2014: On Monday, 18 August 2014 Payton got her device switched on and she responded so well. Payton is now able to hear with her right ear but we still have a long process ahead of us. Although Payton can hear, she now has to learn to listen and recognise sounds. The speech therapist has to "train" her brain to recognise the sounds and to learn to recognise that sounds correspond with something such as an animal or object. This process can take up to 3 months but we are well on our way to Payton developing normal speech and hearing.