Love for Lucy - Support for the DeLuca Family

For those of you who don’t know Lucy, on the outside she looks like any other 5 year old Jo-Jo Siwa, Disney princess loving girl. On the inside, everyday is a battle. She is our special heart warrior. She was born with “complete unbalanced av canal that led to a complex single ventricle heart, total anamalous pulmonary venous connection, double outlet right ventricle, pulmonary atresia, bilateral SVCs, & heterotaxy, which caused a right sided stomach, midline liver and gallbladder, no spleen (no natural immunity) and vein structure differences in her body”. I use quote because that obviously is above my medical knowledge & came from Alex.

Speaking of….

Lucy was born to two amazing parents - Alex & Charles (Cha). They handle Lucy’s obstacles with more grace than I could ever muster. They have soaked up every medical diagnosis, term, & procedure. They have advocated not just for Lucy, but for CHD patients, parents, & research. Then they go the extra mile. Alex is on the board for Mended Little Hearts - Philly. Cha works so hard to support his family to allow Alex to stay home with Lucy. Every year, they work hard to raise money for CHOP to help advance CHD research. Any opportunity for research that doesn’t cause Lucy more pokes or procedures, they are fully in.

Imagine juggling all that & they have 8 month old twin boys!

On April 6th, Lucy went in for the Fontan surgery - her 4th open heart surgery. This surgery reroutes the blood flow to give the blood more oxygen & make the heart run as close to a “normal” heart as possible. Lucy’s surgery was a one of a kind, specialized for her anatomy. But even that went out the door when the surgeons were in there. They created a whole new plan and the surgery was considered successful. We all breathed a small sigh of relief, but knew the next 24 hours were the key to if her body would take it.

One mostly uneventful night passed before the rollercoaster took off. April 7th. Its a day anyone who knows Lucy’s won’t forget. Lucy’s abdomen was filled with fluid - a sign that her body was rejecting the Fontan surgery. A bedside drain lead to a cath lab to check her pressures, a clear indication of how her body is accepting the new flow. She was immediately rushed to the OR to reverse the surgery & Alex and Cha weren’t even allowed to see her. In fact, they were being prepared to put Lucy on ECMO in order to survive the surgery and recovery. Inside the OR, they were able to reverse the Fontan procedure from the previous day. This returned her anatomy to the Glenn that she had prior to surgery on Wednesday.

As of now, we are waiting. Waiting for her kidneys to wake back up & produce urine. Waiting for her body’s swelling to reduce from the surgeries so her chest can be closed up. Waiting to see what next steps will be to help her heart keep up with her always moving body.

While Lucy is fighting for her life & needs her parents by her side. With all the COVID restrictions in place, we aren’t able to hold Alex & Cha’s hand during these uncharted waters for Lucy. The best way to support them is to help them have no worries outside of the hospital and their baby girl.

This GoFundMe will help support them financially for the long recovery road that Lucy has in front of her. The money raised will go toward bills that Alex & Cha have during Lucy’s hospital stay (food, gas, parking, etc), home bills, Lucy’s medical bills, & provide relief from the pressure of Cha having to return to work too soon.

Every dollar makes a difference & there’s no donation too small.

Thank you!