Baby Luci

At 18 weeks, Luci’s parents found out that she was growing with her liver and bowels outside of her body in a membrane sac. This is called an Omphalocele. On that same day they also found out that Luci had bilateral clubfeet and two heart defects. The pregnancy was spent preparing and planning for a baby with multiple health conditions. Luci’s was born early at 37 weeks via C-section to ensure they could get her out safely without rupturing her omphalocele.

 

Luci was born on November 10, 2021. She spent a total of 27 days in the nicu. During her stay, they were able to complete her closure surgery, putting her liver and bowels back into Luci‘s abdomen. Luci was not born with bilateral clubfeet as initially predicted. And after many many DNA test, and she had no chromosome or DNA abnormalities. She was, however born with two heart conditions an ASD and VSD. Luci has struggled to gain weight and, at 6 months, is only 12lbs 4oz.

 

Due to ongoing G.I. issues & severe food allergies, Luci’s needed to go on prescription formula. Luci‘s formula can cost anywhere from $50-$100 a can. In addition to formula cost, she is on other medications, some of which insurance will not cover. Luci sees over seven different specialties Doctors regularly. While the family has been working hard to pay off medical expenses from her previous surgery & NICU stay on top of the accruing medical debt from outpatient visits & testing, they now have to prepare to pay for another surgery.

 

Luci’s VSD has taken an unexpected turn in a short amount of time. Her hole has gotten so big compared to her heart size, which has, in turn, caused excess blood flow affecting her liver & lungs. The right side of her heart is now enlarged, which has caused fluid back up in her lungs making her work very hard to breathe. The excess blood flow has also caused her liver to enlarge.

 

Although VSD closures are a “simple” surgery (these surgeries are normally done at 3 years of age through a catheter)- Luci’s unusual case makes this simple case more complicated; due to her small size, size of hole in her heart, and pressure on her diaphragm because of the Omphalocele. Because of her size, Luci will need open-heart surgery. As of right now- we are trying to buy some time to allow her to gain more weight but surgery is predicted to happen in the next couple of months; but most likely sooner.

 

Despite everything Luci is a happy baby, and she deserves the world. She has been dealt a really tough hand for her 6 months of life but she can teach us all a lesson about perseverance and unconditional love