2019-05-28 – 2019-07-17
Our beautiful son, Otis Wolf Sotos-Castello, was diagnosed with CDH at his 20 week scan. At 29 weeks, the placenta also failed, and Otis had to be delivered by emergency C-section. We were told he was unlikely to survive the birth.
However, Otis beat all of the odds, and continued to amaze everybody involved in his care, whilst we moved in residentially on the Neo-Natal Intensive Care Unit, alongside Otis. He overcame many challenges in his short life, including major surgery to repair his CDH, recovering from a heart attack, and suffering bleeds on his brain and lungs, amongst many others. He spent his entire life on a ventilator, and much of his life sedated, but never once gave up his fighting spirit, and was met and loved dearly by many family and friends.
Sadly, after 7 weeks and 1 day, the intensely difficult decision had to be made to take Otis off life support, as his lungs were never going to be quite good enough due to the prematurity coupled with the CDH, and we took him, as a family, to a Children’s Hospice, to allow this devastating event to happen in a calm, dignified and supported manner.
This is something I read for Otis at his funeral;
The connection between Otis and I was truly unique to us. He was unable to cry to communicate his needs as other babies would, and I could not hold him to comfort him as other mothers would. Despite this we found our own way.
Otis’s birth gifted me with the power of mothers intuition, enabling him and I to communicate even though there were so many obstacles in our way.
Through our special bond Otis taught me of a type of strength I didn’t know I possessed previously. Otis’s resilience became mine, watching him face everyday, whatever it entailed, gave me the capacity to do the same.
Along with all of this came an overwhelming determination to protect him and a bravery (that often took me by surprise) to advocate for his needs.
I am a better person because of Otis, and because of him I am a mother. My body, mind and soul have been changed forever.
This journey has made me thankful for many things; our NHS, and the dedicated staff on the NICU that cared for us as well as Otis.
It has made me grateful (& aware) of the incredible work the Hospice do. The support they gave the three of us in Otis’s last moments meant we could finally have time with our son free of other people, wires, alarms and medication. Giving me the chance to breastfeed him for the first time, for us to take him outside for a walk and for both of us to hold him unrestricted.
This experience also filled me with intense gratitude for my incredible family, friends, and husband and I would like to thank you all, the support and love you have shown enable me to remain positive and gracious.
Most of all I am thankful for you Otis, I will never stop thinking about, talking about or loving you. This day is for you Oatycakes, love you to the moon and back.
