NICU Natales — Light for Lucy

My name is Christine Swing and I created this Go Fund Me campaign in support of my friends, the Natale Family.


In August of 2018, when Toni was 20 weeks pregnant, she had a prenatal ultrasound that showed a “cystic” structure near the umbilical cord.  Toni was referred to Children’s Hospital of Philadelphia for further testing.  At CHOP they performed another ultrasound, a fetal echocardiogram and an MRI.  After multiple appointments, doctors still couldn’t decide exactly what the cystic structure was, but they did determine that the baby had some form of a rare birth defect that affected her bowels.  At Toni’s 38 week appointment, they discovered that her amniotic fluid was low and that the baby was estimated to be 12 lbs.  They decided to deliver via C-Section the next morning.  On November 16, 2018 at 9:29am, Lucy was born to Dan, Toni and big sister Charlie with a combination of rare birth defects that affect her bowel, bladder, urinary tract and reproductive system.  Partially due to this birth defect and the low amniotic fluid, Lucy’s lungs were also underdeveloped and needed breathing support and treatment for pulmonary hypertension immediately after birth.  


Lucy’s birth defect will require multiple surgeries to correct. Lucy already has one surgery under her belt with an additional 3 surgeries expected, and possibly more in the future.  In addition to the birth defect, a Cardiac MRI confirmed that Lucy also has something called an Atrial Septal Defect (ASD).  The type of ASD she has is not the most common one, it is called a Sinus Venosus ASD, in the right upper chamber of the heart.  On top of the ASD, most people have two veins coming into the top of the heart but Lucy has three.  She also has a left-to-right shunt, which diverts blood from the left side of the heart to the right side of the heart.  All of these issues combined means that Lucy has extra blood flow to the right side of her heart, which pumps to her lungs, making it more difficult for her to breathe.  This means that sometime in the next year, she will also need open heart surgery to fix this defect.  The doctors may revisit performing this surgery sooner, depending on Lucy’s respiratory status.


Toni and Dan were optimistic that things would progress smoothly and Lucy would be able to be home between rounds of surgery; however, it has been a very bumpy road and Lucy is still in the NICU. Lucy has made some progress since birth and is currently off the ventilator, but she still has constant breathing support from a BiPAP machine.  She continues to struggle daily as the doctors figure out the amount of breathing support she needs.


There is no saying when Lucy will be able to go home with her family. There are still many surgeries and recoveries ahead for her, and there is no way to know how her breathing will progress.  For the time being, Toni will be unable to return to work so that she can continue to go to the hospital and take care of Lucy over the next year until all of her surgeries are completed.  I am creating this fund to help the Natale family to ensure they can cover the mounting expenses that come with an extended stay in the NICU (driving/parking expenses, food, babysitting care for their other daughter, etc). 


Toni and Dan are wonderful parents doing everything they can to support Lucy and the rest of their family.  Each day is a struggle but each day holds the promise of progress.