What could have been a nightmare turned into a happy ending…
When I went into labour with my 2nd daughter Clara everything was going as planned but as soon as she entered the world it become a life threatening situation. Clara was born with no airways in her nose and could not breath.
We were rushed to the hospital where our beautiful baby girl was intubated and sedated. We were told that she could not sustain her breath on her own and was sent to specialized team that cooled her under a blanket for 3 day. This blanket was used to reduce and slow down damage and swelling to the brain due to lack of oxygen. It was here that we began our journey and started our new life with Rare Disease.
Clara has CHARGE Syndrome.
CHARGE effects 1 in 10,000 babies and is medically and developmentally one of the most complex conditions known. Children with CHARGE syndrome are also likely to be amongst the most truly ‘multi sensory impaired’ people you will ever meet, having difficulties not just with vision and hearing but also with the senses that perceive balance, touch, temperature, pain, pressure, and smell.
Clara has these features:
C- Coloboma (hole in eye) and new diagnosed Glucoma
H-Two holes in heart. These holes are not closing and she will undergo open heart surgery when she is 2/3 years of age.
A- Bilateral Choanal Atresia (Nose blocked with bone)
R- Retardation Growth
G-n/a at this time
E-Clara is profoundly deaf and has no nerve and underdeveloped cochlea in left ear. She has a cochlear Implant in her right ear.
*Clara also has proprioceptive and vestibular dysfunction and feeds through a feeding tube with some oral feeding.
Clara has had 14 surgeries in 2 years of life:
-7 nose repair surgery’s
-1 G-tube surgery
-1 G-tube closure
-3 Eye surgeries
-1 Chest Tube
-1 Cochclear Implant
-15 + Hospitalizations
and countless needle pokes, nose suctions and others tests we cannot remember.
At just 2 years old Clara is now thriving! She can breath through her nose which has allowed her to learn to eat through her mouth. She moves around without getting tired and can hold her head up on her own! She is able to hear through her right ear with the implant, army crawl around the floor and is learning to sign!
Clara, along with our oldest daughter Nadia are the most amazing gifts. They teach us to LOVE harder, FIGHT harder, CRY harder, LAUGH harder and dig deep and face our biggest fears. We have lived a lifetime together in this past 2 years and our family is so strong because of it. I would not change any of it for the world.