Scarlett’s story begins far before her diagnosis of HLHS. Chris and Jessica met over 10 years ago, married and both wanted children but were unable to conceive on their own. After 2 years of trying to conceive naturally and 5 failed IUIS, they conceived with IVF! Their first daughter, Haven, now 2yrs old, was born. 

Being an only child, Jessica desperately wanted their first born to have a sibling of her own. They attempted IVF again but only to be told it failed. They didn’t give up hope! They tried one last time and were blessed to be pregnant with Scarlett. 

“Scarlett Rae” was conceived. They made it to 9wks and got to hear a heartbeat. Shortly following, they were told Scarlett had a high risk of Turners Syndrome. She was given only a 1-2% chance of surviving to live birth. They chose against an amniocentesis after learning the increased risks of miscarriage and putting their faith fully in God.

At around 18wks gestation she was found to have severe aortic stenosis. They were due to intervene in utero around 22wks but the procedure was canceled due to the restrictions of COVID -19. The stress on the left ventricle in utero eventually led to decreased perfusion and stopped the growth of the left ventricle. She was then diagnosed with hypoplastic left heart syndrome or HLHS; a rare congenital heart defect in which the left side of the heart is severely under developed. 

Although Chris and Jessica loved the name, “Scarlett Rae” they knew “Scarlett Grace” was just more fitting and by the grace of God would have their little angel here with them. 

Scarlett Grace was born at St Joseph Woman’s Hospital in Tampa, Florida on 7/16/2020 and immediately transferred to the Pediatric cardiac intensive care unit at St Joseph Children’s Hospital for treatment. She stayed for 3 days and was then transferred to Shands Hospital in Gainesville for a second evaluation for heart transplant. She is unable to survive without intervention. 

The family has left their home and jobs to be near her side in Gainesville, Fl. Haven, who is eager to meet and love on her little sister, is with them. They are learning to take each day in stride and praying for a successful life-giving outcome! 

It will be at least a few months away from their home, possible relocation, given the best case scenario. Currently they are living out of a hotel until they can determine the best way to proceed. 

Since this surgery carries with it significant expenses – not only for the procedure, but for a lifetime after – the family has partnered with the Children’s Organ Transplant Association (COTA) to raise funds. The family appreciates any support you can offer. No amount is too small – every penny counts.

Thank you for your support of COTA on behalf of Scarlett Grace.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.