Meet Ruby
Child's Diagnosis: Tetralogy of Fallot and 22q 11.2 Deletion Syndrome
Has Kerrington’s Heart impacted your journey? If so, how?: Yes, we received somethings and information from Kerringtons heart while at the hospital. Ruby also has the same diagnosis as Kerrington.
What’s one thing you wish you’d been told at the beginning of your journey?: To focus on the now and not the future.
What’s one word you would use to describe your journey and why?: Eye opening
I never knew so many children and families struggle with heart defects. Also I have learnt so much from my sweet girl.
Please share a little bit about your story: Ruby was born at 39 weeks. I had received prenatal care the entire pregnancy and never knew Ruby had a heart defect until she was born. After birth Ruby was taken to UK where she was diagnosed with Tetralogy of Fallot. The next day she was transferred to Cincinnati Children's hospital to have a stent put in and was diagnosed with 22q 11.2 deletion syndrome as well. Ruby was sent home with a feeding tube and oxygen to wait for her next surgery. At 3 months old Ruby had open heart surgery at UK to repair her Tetralogy of Fallot. She is currently 6 months old no feeding tube and only oxygen at night. Continuing therapy and doing well. We couldn't imagine our life without her.
Information on Coronavirus Disease 2019 (COVID-19)and Congenital Heart Disease
In response to the Coronavirus and your child with heart disease, please make sure you are relying on the official Center for Disease Control and Prevention (CDC) website for accurate information. In the most recent link (3/8/2020) they provide precautionary measures that you can take, symptoms, and what to do if your child gets sick. The main take away is to remain calm but attentive! We, as parents, are not foreign to fear as we experience this on a daily basis with the flu, RSV, etc. We know as of now the flu is a far greater risk to our children.
For those that are around children with heart disease and their families, we ask that you be considerate of the health risk at this time. The obvious is to keep illnesses away but one great way to support them during this time would be to avoid bodily contact.....we love a smile and a wave.
