I'm setting up this page on behalf of my sister, Carine and her family (Chris, Kolbe, and Kayleigh Williams). Any of you who have the pleasure of knowing them know what a loving, positive and strong family they are.
Kayleigh was born on November 6, 2017. At Carine's 20 week anatomy scan, her doctors detected several congenital heart defects in Kayleigh's heart. Her diagnoses are: Hypoplastic Right Heart Syndrome with Tricuspid artresia, pulmonary stenosis, artrial septal defect (ASD), and ventricular septal defect (VSD). The means Kayleigh has a single ventricle heart (half a heart)- her tricuspid valve is missing, so when her heart was forming, there was no way for blood to flow into her right ventricle, preventing it from developing as a normal heart would. She also has 2 holes (ASD and VSD) which are allowing blood to flow through without the presence of the Tricuspid valve, but they will need to be closed eventually. Her pulmonary artery is also underdeveloped, and does not carry adequate blood flow from her heart to her lungs, causing lower oxygen saturations and blue spells. These are known as cyanosis (she begins to turn blue around her hands, nose and feet).
Kayleigh is currently in the Cardiac ICU preparing for her Glenn operation, which will detach the superior vena cava from her heart and connect straight to her pulmonary artery (bypassing the right ventricle since it's grossly underdeveloped; and relieving pressure on her heart). This surgery is scheduled for Monday, February 12. She will need further surgeries to continue and complete the repairs to these defects. It is possible that she may eventually need a full heart transplant.
Despite all this, Kayleigh is a very strong baby, smiling through her tubes, playing, hitting most her other developmental milestones and even defying some of the other usual symptoms a baby with her diagnosis would have! She is a fighter already. <3
Our family was so sad to hear about all this when Carine shared the diagnosis and prognosis as she received information through her pregnancy. Somehow through it all she and Chris have remained positive and incredibly strong through this extremely stressful and scary time.
They also currently have a son, Kolbe, who is 2.5 years old. Kolbe is a sweet, incredibly loving and happy little boy who LOVES his parents and new sister....and Mickey Mouse!! He is autistic, and has his own routine of therapy appointments. In a situation like this, it can be very difficult feel as if you're providing 100% of your time/attention/love to both children (God knows that's the case in normal real life without these stresses!!), especially when so much time will need to be spent at Kayleigh's side recovering from surgery. Carine and Chris continue to be amazing parents and divide their time between their 2 children.
I know they appreciate and feel the love, thoughts, prayers and support that have been surrounding them from our amazing groups of family, friends and co-workers. They never intended to ask for more than prayers, but expenses related to an extended hospital stay certainly begin to add up. That's why i wanted to put this together to ease the burden of these worries, as they focus their energy on the well-being of their children. Thank you so much to anyone reading, for your help, thoughts, and prayers, we really appreciate it!!
- Eldna Smith
- Nila Parvizian
- Rebecca Fiorito
Organizer and beneficiary