Every year, 100,000 babies don't make it to their first birthday because of CHD.
Lucy Scott DeLuca | Heart Warrior of the Week

Lucy Scott DeLuca was diagnosed with heterotaxy[1], HLHS[2], TAPVR[3], DORV[4], bilateral vena cava[5] and pulmonary atresia[6] at her 22-week ultrasound. The ultrasound tech first noticed some misplaced organs then called in a doctor who recommended a fetal echo. It was at that appointment with a specialist from Children’s Hospital Philadelphia the very next morning when she was diagnosed with HLHS, DORV, bilateral vena cava and pulmonary atresia.

Little Lucy made a fierce entrance into the world on March 17th, 2017. It wasn’t until then that her TAPVR was fully discovered.  In her first days of life, she underwent one cardiac catheterization and the Norwood procedure[7] where she received a BT shunt in preparation for the Glenn procedure[8] that usually takes place when the Heart Warrior is 6-9 months old. She spent three weeks in the hospital recovering and is currently on five medications to keep her tiny heart functioning.  The hope is to wean her off some of these medications after her Glenn procedure.

TAPVR, HLHS, CHD

Lucy’s parents describe her as tenacious, spirited, lovable and happy. When asked about their journey with CHD, her mom said the following:

We worry continuously about her getting sick. We also check her pulse ox and heart rate twice daily and track her weight daily. We keep medicine charts and feeding logs. We have to watch every little change because of how fragile she is between surgeries. We are “inter-stage,” which is a super risky time for these children and has a high mortality rate, so we are pretty restricted on taking Lucy out of the house or having visitors. She has only really met her immediate family because we can’t risk her becoming ill since any little sickness could send her back to the hospital immediately.
Lucy has inspired us by showing her warrior spirit since day one. We were told that she may not even make it to her surgery, we were told to anticipate not being able to hold her for weeks, we were told to expect to spend weeks, if not months in the hospital because of how complex her condition is. Despite what we were told, we were able to hold her, feed her, and bathe her all before her first surgery at just 6 days old. She was extubated one day after her surgery, chest tubes were out and we were moved to the step down unit within 3 days. We ended up taking her home at 21 days old, only 15 days post-op, which is a quick recovery for anyone, let alone an extremely complex case like Lucy’s. She came home and has been thriving. She has been gaining appropriate weight and surpassing feeding goals (after we begged to take her feeding tube out) and has proven she is able to eat all on her own. Every single thing about her is a complete miracle.
Lucy has surpassed every single expectation. She has inspired so many more people than we could have ever imagined. She has followers all around the world and people praying for her daily. We have been shocked by the outpouring of love and support, especially from the Heart Community. We feel so lucky to be Lucy’s parents and we cannot wait to see how she continues to change the world.

 

CHD awareness, CHD support, save the heartbeay

[1] A rare birth defect that involves the heart and other organs being misplaced within the abdomen.

[2] Hypoplastic left heart syndrome. A heart where the left side of the heart doesn’t develop properly during pregnancy affecting blood flow throughout the heart and body.

[3] Total anomalous pulmonary venous return. A heart defect where all four pulmonary veins do not connect normally to the left atrium. Instead, they drain abnormally into the right atrium by way of an abnormal connection.

[4] Double outlet right ventricle. It is a rare form of congenital heart disease where both of the great vessels connect to the right ventricle. In a normal heart one of the great vessels connects to the left ventricle and the other to the right ventricle.

[5] A heart defect that leads to an abnormal vascular connection leading to diversion of blood flow.

[6] Instead of opening and closing to allow blood to travel from the heart to the lungs, a solid sheet of tissue forms, so blood can't travel by its normal route to pick up oxygen from the lungs.

[7] The first in a series of three open-heart surgeries to treat HLHS. It converts the right ventricle into the main ventricle pumping blood to both the lungs and the body.

[8] The second in a series of three open-heart surgeries to treat HLHS. It diverts half of the blood to the lungs when circulation through the lungs no longer needs as much pressure from the ventricle.

Comments

Dot Stevenson

Dot Stevenson said:

Your story is inspirational! I keep Lucy in my nightly prayers. She is lucky to have such a strong family.

Jill donobue

Jill donobue said:

Such a strong princess! Love for Lucy! ?

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