Meet Kuno

written by Kuno’s mom Yukari

It was my first ever pregnancy and everything was going well and as expected with all antenatal exams. I was working as a Urologist at a busy tertiary hospital, Cambridge University Hospital, until at a very late stage of pregnancy. I was enjoying feeling Kuno's robust movements in my womb, anticipating a celebratory happy moment soon to come. This all changed at GW 36 - I am not sure if one would call it a 6th sense, gut feeling, or intuition, but I felt the urge to be scanned. Out of blue, there was this scary-looking severe hydrocephalus on the ultrasound, in which his CSF took up almost half of his brain! We quickly acted and switched to a C-Section. At this point, we were warned Kuno may not even survive through the delivery itself. Since the day I saw the ultrasound image of Kuno's brain, both my husband and I had cried day in and day out – because as physicians, it was all too clear what it meant.

Kuno has received a VP shunt to remove his excess CSF at just 2 weeks after his birth, which was followed by surgical shunt infection, developed into meningitis and multiple medical malpractices which necessitated an extra surgery. As physicians ourselves, it was unacceptable and horrifying to witness some of the events took place during this time. We have decided to change our career and family plans all together and made a big move from the UK/Germany to Japan, where I was originally from, in hope to give Kuno the very best possible options in life. 

Fortunately, Kuno's willingness to live and thrive has been beating all the odds and now he is a very happy, active, and energetic soon-to-be 3 y/o, who is doing his duty of "terrible-two" things and keeping his parents occupied and exhausted. Up until a few months ago, Kuno was even seizure free for more than 1.5 years - unfortunately, we had a very scary incident in September where he fell unconscious for hours and was transferred to the ED by ambulance and was nearly intubated.

Kuno is now walking on his own, building up a huge range of vocabularies in both English and Japanese (and a bit of German), talking, singing, and dancing ever so eagerly. He is a kid-model here in Japan. He goes to kindergarten, enjoys regular PTs/OTs as well as swimming. He has powerful genuine smiles which brighten our darkest times, mischievousness, and wit to bring unexpected laughter, and sweet nature to keep us going without falling apart at our weakest moments. 

I think uncertainty and lack of options are very difficult aspects of this condition for many of us. We would always have to prepare ourselves for many different scenarios...happiest or saddest. It is an extremely isolating and exhausting journey for us. Many of our family members and friends slowly looked away from our hardships and put us aside socially and moved on without us as if nothing happened. This indeed has been the most taxing challenge I have ever encountered in my life - every day our strength and resilience are being tested.