What is CHD? How did it affect Parker?

Every February, we shine a light on the tiny but mighty warriors battling congenital heart disease (CHD), the most common birth defect affecting nearly 1 in 100 newborns. CHD Awareness Month is more than just a time to share facts—it’s a movement to honor the strength of those living with CHD, remember the ones we've lost, and advocate for better research, treatment, and support. Whether you're a parent, survivor, medical professional, or simply someone with a heart for the cause, this month is about amplifying voices, spreading hope, and driving change.

When I was just 20 weeks pregnant, we were referred to a Maternal Fetal Medicine Specialist to get extensive scans on Parker. Once I was 24 weeks pregnant, it was confirmed that they could see a very significant hole in Parker's heart, and they were unable to identify the third and fourth chambers of her heart. Through several scans, fetal specialists, and cardiologists, Parker was diagnosed with Coarctation/hypoplasia of the aortic arch and Posterior Maligned Ventricular Septal Defect.

What the heck does that mean? When we got these diagnoses, my mind was racing. I knew nothing about any part of a heart, other than it pumps blood. So, imagine a newborn's heart as a complex highway system, designed to keep blood flowing smoothly to every body part. Now, picture a major roadblock narrowing the path—this is coarctation of the aorta (CoA), a condition where the body's main artery is pinched or too tight, making it harder for blood to reach vital organs. The heart has to work overtime, like a driver stuck in a never-ending traffic jam, trying to push blood through the bottleneck.

Add another challenge: hypoplasia, which means part of the heart is underdeveloped, like a bridge that was never fully built. This can affect different areas, but when it impacts the left side—responsible for pumping oxygen-rich blood to the body—it can make every heartbeat a struggle. Infants with these conditions often need urgent medical care, sometimes surgery, to reroute or widen their heart’s pathways. These two conditions sound hard enough to manage, especially when you picture all of these things occurring simultaneously in a heart the size of a walnut (yes, they're that small!).

But of course, Parker's case doesn't stop there. If you know Parker, you know she does things differently. The scariest part of Parker's heart, for me, was her Posterior Maligned Ventricular Septal Defect. Our hearts are like a beautifully built, intricate house, divided into rooms that keep oxygen-rich and oxygen-poor blood separate. Now, imagine a misplaced door between two rooms that shouldn’t be connected—that’s a posterior malaligned ventricular septal defect (VSD). In this condition, there’s an opening in the wall (septum) between the lower heart chambers (ventricles), but instead of being neatly centered, the gap is shifted backward (posterior) and misaligned. This misalignment can disrupt the heart’s natural flow, allowing oxygenated and unoxygenated blood to mix when they shouldn’t. In some cases, the shifted wall can even block or narrow key pathways, making it harder for blood to reach the lungs or the body. The heart works extra hard, like a house’s plumbing system struggling with a misplaced pipe, leading to increased pressure, extra strain, and sometimes the need for surgical repair. In Parker's case, her lungs were filling with blood and her body wasn't getting enough. At just 7 days old, she was whisked away and operated on for 6 hours to repair her heart.

Parker had her surgery at Cook Children's Medical Center performed by Dr. Vincent Tam. Dr. Tam invented the procedure he performed on Parker! She underwent a resection of aortic coarctation with aortic arch augmentation, Patch closure of a large mal-alignment VSD, with resection of subaortic muscle, Subtotal closure of the atrial septal defect, Placement of a transthoracic left atrial pressure monitoring catheter, Partial thymectomy, Modified ultra hemofiltration, Mediastinal exploration, and delayed sternal closure. Wow. When I look back at all of her records to be sure I type everything correctly, it's overwhelming all over again. Remembering everything her tiny body endured, how she looked, how she struggled, the days she literally fought for her life. I thought we'd never escape those nightmares.

Parker left the OR with 6 transfusions, 3 attempts to come off bypass, a new autologous pericardium, and a pulmonary branch patch. I know, I know, more medical talk. Basically, they reconstructed Parker's aortic arch using her pericardium and used a cryopatch to repair the VSD.

After a month of being home, we received a letter in the mail containing Parker's Certified Donor Card and information about Parker's implant and how to reach out to the donor family, if we wanted to. Donor family. Parker's patch came from another small baby that lost a fight for other reasons, and their family graciously saved my baby. Another family lost their baby and made the choice to allow their child’s legacy to continue in my Parker’s chest. Parker would not be here without that family’s sacrifice and selflessness. The words on the top of the card say “The human tissue you have received in your surgery is provided through the generosity of a donor family whose final wish for their loved one was to help others.” My heart breaks for that family. I’m so thankful for that family. My heart is sad, but full of gratitude in a way I hope I can express to those parents one day.

I had no idea. Maybe I did, but the information regarding Parker's surgery and conditions came at us faster than a bullet train and I really have no idea if they ever told us that. All I knew in the days leading up to Parker's birth and surgery was that she was sick, she needed urgent intervention, and Dr. Tam looked confident enough for me to trust him with my daughter's life.

Happy #CHDAwarenessMonth.

Did you know when babies are in the womb, their heart pumps blood completely differently from when they come out? Once they’re breathing oxygen, their heart reconfigures itself completely. I’ll attach a photo that better describes it. So, while she was in the womb, the VSD wasn’t affecting her, but once she was born, she’d need immediate intervention because blood would only be pumping into her lungs. By the time we were 48 hours out from her surgery, she was struggling to breathe because her lungs were so full of fluid.

Finding out about her heart defect 100% saved her life. I also attached an image that shows how her heart was working before her surgery.

25% of babies born with a complex CHD will not see their 1st birthday.

CHDs are the most common cause of infant death due to birth defects.

Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.

Because of advancements made through research, death rates from CHDs in the U.S. have declined by 37.5% since 1999.

Congenital heart defects (CHDs) are problems present at birth that affect the structure and function of the heart.

The warning signs of Congenital Heart Disease in infants and children may include a heart murmur or abnormal heart sound, cyanosis (a bluish tint to the skin, fingernails and/or lips), fast breathing, poor feeding, poor weight gain, an inability to exercise and excessive sweating.