Each year on the anniversary of their daughter Kate’s open heart surgery, the Daniel family takes a day to celebrate and reflect on the success of the repair and the new beginning it created for Kate’s life. In January of this year, they celebrated Kate’s 6th Heart Day!
When Kate was born, she experienced difficulties with her oxygen levels. Shortly after delivery, this meant that she needed to go to the NICU. While in the NICU, Kate displayed traits associated with Trisomy 21, or Down syndrome, which initiated multiple checkups that led to the discovery of her CHD, Tetralogy of Fallot.
We were very scared when we learned of Kate’s diagnosis and were nervous about such a critical surgery on such a small baby. We wondered how this condition would affect her livelihood. But surgery day came and Kate’s heart repair was a complete success!
Throughout that time and up to now, Sibley’s role was critical. They explained her condition in the beginning and educated us on signs of concern leading up to her surgery. They walked us through the process and her post-surgery care. Today, Sibley monitors Kate with her annual Echo.
One thing that we found helpful during that time was the Beads of Courage program. Beads of Courage were comforting for us when Kate was having her surgery. For every poke, test, and achievement, a bead was something positive that she earned, and the chain continues to grow with each exam. Her beads of courage are proudly displayed in her room as a reminder of her strength!
On Kate’s Heart Day, we always give thanks to the surgical team and nurses who cared for us at CHOA and we make sure to do something fun with family and friends each year. For families who are going through the same thing, we want to let them know that the doctors, nurses, and staff at Sibley are phenomenal. Rely on your family and your faith, and trust your surgeon’s skills and knowledge – you all are in good hands.
Thru our annual Heart Day and sharing Kate’s story, we have met many other families who share this journey and have their own Heart Day, too! Today, Kate is a very active 6.5 year old – she loves her trampoline, riding horses, swimming, and she plays spring and fall baseball. There is never a dull moment, and she is living a very full restriction free life thanks to her heart being fully repaired 6 years ago. She loves to watch movies, jump on her trampoline, play baseball, swim, kayak with her Daddy, dance, sing songs, and do any type of arts and crafts!