Lacey Jane, Heart Warrior

      In May 2017, Amanda and Johnny went in for a routine anatomy ultrasound for their baby girl. At that appointment there was an abnormality seen of the heart. The doctor stated that it could be a possible congenital heart defect (CHD) called HLHS (hypoplastic left heart syndrome). About 1 in every 100 newborns are born with a CHD. Two weeks later, Amanda went in for a fetal echo and it confirmed that Lacey Jane would be born with HLHS. HLHS affects the normal blood flow of the heart and occurs when the left side of the heart does not form correctly.


Through many tears and fears for the future, Amanda and Johnny dug into research, joined support groups, and bought children's books to explain to big sister Riley about her sister's very special heart. And they all learned that Lacey Jane would be what the CHD community calls a heart warrior.

With love and support from family and friends Amanda and Johnny prepared for their very special heart warrior. On September 14, 2017 at 37 weeks, Lacey Jane was born via scheduled c-section due to Amanda developing pre-eclampsia. Lacey Jane was transported to another hospital so her heart could be evaluated and her team of doctors could develop a plan. At one day old, mom, dad, and baby were reunited and Lacey' s team discovered she did not have HLHS but a rarer CHD called Shone’s Syndrome. Lacey's Shone’s syndrome involves a leaky right tricuspid valve, left heart abnormalities, and a coarctation (narrowing) of her aorta.

 On September 19, 2017, at 5 days old, Lacey Jane truly became a heart warrior as she underwent her first heart surgery to correct the narrowing in her aorta. She is currently still recovering from surgery, but showing improvements. Lacey will most likely require additional heart surgeries in the future but her family is taking it one day at a time.

 We started this Gofundme to support our heart warrior Lacey Jane and her family with medical, travel, and parking expenses. Any donation is greatly appreciated! On behalf of her family, we would like to thank everyone for all the love, prayers, and support they have already received! As Lacey's mom has said "Lacey Jane has already added so much love to this family and we are another step closer to bringing her home." 

Love, Aunt Rara ( Sarah) and Lala (ALapp)