Olivia is a 6 month old baby girl who was born with Anomalous Origin of the Right Pulmonary Artery.
On 2/12/20, Olivia was born at 11:40AM at 7lbs. She came out screaming and ready to take on the world, which we’ve now seen firsthand. We knew prenatally that Olivia would be born with a rare congenital heart defect (CHD) that would require surgery at some point, but we never anticipated the emotional journey that would lay ahead for our new family. Olivia underwent a catheter procedure and had a stent placed in her right pulmonary artery at 3 days old; the procedure went perfectly and we were set to go home. However, as we prepared for discharge on her 7th day of life, we were abruptly launched into the terrifying and unpredictable world of CHD. Olivia’s left lung suddenly and unexpectedly collapsed. It was the most terrifying moment of our lives, but she was letting us know that she wasn’t ready to go home yet. The quick acting doctors at Lurie Children’s Heart Center saved Olivia’s life.
Olivia continued to live her first few months of life in the cardiac ICU at Lurie's and underwent 1 additional catheter procedure in preparation for open heart surgery on May 4th, 2020, in which she received her full repair! She was discharged 5 days later just short of 3 months old.
Through lines, drips, a battle with NEC, various respiratory supports, blood transfusions, and test after test, Olivia persevered. Olivia is now a thriving baby who is meeting her milestones and enjoying every minute of life! We are devoted to raising awareness about CHDs and we would appreciate any donation you are able to make:
The Conquering CHD - IL chapter is a program of Conquering CHD, aimed at improving the lives of those with congenital heart disease and their families through direct support and education – meeting families where they are.
Through our State Chapters we are able to give knowledge, give a voice and give hope, directly meeting the comprehensive, lifelong needs of patients with congenital heart disease and their families through support, education, advocacy and research programming.
Local activities include:
-Conquering CHD Kits offering critical information and a personal connection for patients with CHD of all ages through individualized care packages
-Online chat networks bringing people with similar experiences together
-In-person peer support offering patients and families encouragement and insight from someone who has walked a similar path
-Social events providing a safe environment to celebrate life and simple joys together
-Physician education improving understanding of congenital heart disease from the patient and family perspective
-Research promotion and participation helping promising developments become reality
-Advocacy activities sharing our stories to improve federal research funding.
Find more information about Conquering CHD at: www.conqueringchd.org
Conquering CHD - Illinois www.conqueringchd.org/Illinois