Riley’s first year

Our little girl Riley just turned one. We weren't able to have a proper party for her due to COVID level 4 restrictions in Auckland at the time, but we did have cake and an online party with family. Where has that year gone?! It has definitely been one of the toughest that Gwen (my wife) and I have faced. We couldn't have done it without an amazing amount of support around us. Our family and friends, but also our community team of medical professionals.  

One thing we have learnt in the past year is that CHARGE is relatively rare and complex and no two kids seem to be the same. This has made it difficult for anyone to be able to paint a really clear picture of what the future could look like for Riley, and us. So a little background on our story. Riley was born in September 2020 and we did not know anything about her CHARGE Syndrome. She had to be resuscitated shortly after birth due to her bilateral choanal atresia. Riley was intubated and sedated and transferred to the NICU at Starship Hospital. Within 48 hours the Neonatologist had given us the CHARGE diagnosis. Needless to say, and as I am sure a lot of parents in this group can relate to, it all came as a very big shock to us and many tears were shed. Following that there was the inevitable googling by us of what CHARGE Syndrome actually was. Very overwhelming. But coming across this group has been very helpful, and seeing positive stories about what our kids are capable of is very encouraging.  

We spent six weeks in hospital. Riley had her first surgery at six days old, to repair the choanal atresia and insert stents, and between six days and six months she had a further eight general anesthetics/operations. Summing up Riley's CHARGE characteristics in a few words is hard. She has coloboma in both optic nerves, we don't yet know her vision capability but she seems to do ok with things close up. She has some minor heart and kidney problems. She is definitely small and has been fed predominantly via NG tube for her first year. The ninth operation was for her cochlear implant (one side only) which has been absolutely amazing as she is profoundly deaf in both ears.

Given these challenges that Riley has faced we have been surrounded by medical professionals since day one and have attended many appointments, as you will all be very familiar with. We do feel lucky to have a great team who have Riley's best interests at heart. This has been especially evident during our most recent COVID level 4 lockdown restrictions where it could have been easy for planning to stall. Our team has managed to schedule key people into combined Zoom meeting sessions to discuss next steps for Riley, particularly in relation to feeding and communication. These sessions included Speech Language Therapists (Kristi and Aaron), Dietician (Jane), Homecare Nurse (Narelle), Developmental Therapist (Eleanor), Audiologist (Denice), Ministry of Education Hearing Adviser (Samara), Resource Teacher Vision (Anna). These lovely people have been with us from the early days and they know Riley well. They love seeing her make progress almost as much as we do. There have been others along our journey who have also been awesome.    

There is still a lot we don't know. There will be many more appointments and many more medical professionals. What we do know is that Riley is very resilient and brave and strong and we are loving seeing her cheeky personality starting to shine through. We are so proud of what she has achieved so far. She is loved by so many and we have really felt that this past year. We are currently cautiously celebrating the big step of Riley having her NG tube out. She is loving it and so are we! 

If anyone has any questions, or advice, based on our story then please don't hesitate to get in touch. There is so much we need to learn and what better place than from those who are ahead of us on this journey. We also know how hard it is to be a parent with this new and unexpected diagnosis and what it feels like to be searching for answers. Kia kaha. 

Tania Drain and Gwen Willis (parents of Riley)