1. The Thiel Family

2. Hailey

The relief of knowing there is help

Our medical journey started with the preterm appearance of our 4th child in August of 2020. While we spent almost three weeks in the Lethbridge NICU watching our beautiful baby girl get stronger each day we also were informed that she did not pass her new born hearing test. As our main concern was getting her to eat and breath at the same time and getting her off the oxygen she was on 24/7, it didn't seem like the biggest life threating detail. 

Fast forward to us finally being able to take our baby home to meet her other brothers and sister, we were directed to follow up with the audiologist in Lethbridge who would do a more in-depth hearing test to gauge the extent of hearing loss. We are from a small town across the BC border so it would require us to travel back into Alberta for initial follow up. 

We had our first ABR (auditory brainstem response) hearing test in October where we were informed that she would require more testing by the audiology clinic in the BC children's hospital in Vancouver. 

At this point we were sure our baby was indeed deaf and we would do whatever it would take to have her have a successful life. We started looking into different American sign language classes and resources, we got the referral for the BCCH and waited for a date. 

In the mean time our baby also had a few other scary medical occurrences (one where we had to call 911 because she had stopped breathing due to a possible seizure). We had great support from our Doctor and she got referrals in for us to see not only Audiology, but also Opthalmology, Neurology, Cardiology, and medical genetics while we were at the BCCH. 

When we got to Vancouver and saw the different specialists, we were given the news that our daughter was born profoundly deaf in both ears, not just hard of hearing. We were told that the likely hood of hearing aids being any benefit was slim. 

Thankfully the other specialists were able to give us the all clear after a few exams, EEG, ECG, eye exams, etc. Even genetics came back after the 12 weeks of waiting with the results that her condition was not genetic. 

We did more testing on her ears in the next few months and we were fitted for hearing aids in January 2021. 

We started the process of seeing if our daughter was a cochlear implant candidate and after a few months of waiting and doing behaviour testing with the hearing aids in we were told she did indeed qualify for the Cochlear implant surgery. We were also able to find out the reason that our baby had all these medical issues when our other 3 children had absolutely nothing medically wrong. Through further testing of her new born blood samples she was identified as CMV positive at birth (Cytomegalovirus), meaning that at some point while I was pregnant with her I contracted this very common virus that presents itself like the common cold. It has many potential complications for a pregnant woman and if contracted for the first time while pregnant it has an 80% chance of being passed on to the baby in utero. One of the major side effects is hearing loss in babies. 

With all the information we were given and the different options looked at we decided to go ahead with the implant surgery and give our baby the only chance she would have to be able to have sound in her life. The surgery and all the follow up would be at the BCCH where their cochlear implant department will be her long term team until she turns 18 years old. We are having to travel the 12 hours across the province many times in the next few years and as you can imagine the financial burden would be alot to handle alone for a single income family of 6. Friends of Children has already helped us in getting to her surgery that was in June and other appointments in the last 6 months and is going to be there helping us get to her other appointments where our daughter will be on the path to having access to the world of sound. 

We have been so impressed with how easy it has been to work with them and how helpful and caring Friends of Children has been. It helped make our decision to go ahead with the surgery easier knowing the amount of follow up we would have to do and that there was help out there for us. 

Thank you so much! 

The Thiel Family