Unyielding Love: Defying the Odds for Her Baby Boy's Heart

February is CHD Awareness Month

By Bryanne A. Tome, publisher of Macaroni KID Hershey to Elizabethtown, Pa. February 13, 2024

Editor note: February is a month known for hearts, but not all hearts are celebrated for love alone. It's also a time to recognize the strength of those battling congenital heart defects, as February marks Congenital Heart Disease Month. Macaroni KID publisher Bryanne Tome’s story serves as a powerful testament to the resilience of the human spirit, the unwavering love of a mother, and the hope that can emerge even in the face of the most challenging circumstances. Lukas, because of your mom’s story, you’re in all of our hearts now.

I was 18 weeks pregnant when I first learned about my baby boy’s five heart defects.

We were told he had a very small chance of survival.

But I didn’t care what the doctors said. I knew I had to fight for him because he couldn’t yet fight for himself.

The scariest start to life

When induction day came — Sept. 05, 2017 —  there was a staff of 10 specialists on hand just for my son’s care. We delivered in a room where doctors could do emergency surgery on him just steps away from where I was. It made for a very terrifying experience, knowing that within seconds of delivering my sweet little boy, he would be taken away and maybe rushed into open-heart surgery.

But it turned out the emergency surgery wasn’t needed and I was able to see him and kiss his little head before he was taken to the NICU.

For the next six days, the doctors worked up plans and did testing on Lukas, including 3D imagery of his heart. On the 7th day, they did a stent procedure in hopes of giving him some time to grow before trying a full heart repair. 

This procedure gave us seven months to let Lukas grow from his birth weight of 8 pounds, 3 ounces to 12 pounds.

But then our time was up. His oxygen levels were regularly getting dangerously low.

The pediatric cardiothoracic surgeon explained there were three options for repairing his heart, but that he wasn’t sure what would work until he had opened up my son’s chest.

This was terrifying, as it felt like there was no true plan in place.

I remember sitting in the waiting room not knowing what my little boy was going through.

That eight hours felt like a lifetime.

But when the surgeon came out, he had good news: The surgery had gone very well. It was, he said, the best-case scenario he could have hoped for.

A child, helpless

That first moment of seeing him after surgery was so hard. No one can be prepared to see their baby with all the tubes, monitors, and IVs necessary. It was devastating. 

All I wanted to do was hold him, but I couldn’t. We could barely touch him.

After a very long eight days full of ups and downs, we were able to bring him home. 

‘Always hope and possibility’

Lukas is now six and doing amazing. We were told doctors anticipated he would need surgery again at ages three, five, ten, and eighteen, due to having artificial parts in his heart that he will outgrow with time and the possibility of additional complications from the way his heart was repaired. 

But Lukas, thankfully, has not needed another surgery to this day. 

Instead, he is thriving! He may be smaller than most 6-year-old boys but he is just as active, smart, and outgoing as any child.

He has surpassed all the expectations of the doctors who have crossed our paths over the years. His journey has taught me that even in the face of adversity, there is always hope and possibility.

Lukas’s Heart Defects:

1. Ventricular Septal Defect (VSD) - a hole in the wall separating the two lower chambers of the heart.
2. Double Outlet Right Ventricle (DORV) - the pulmonary artery and the aorta are both connected to the right side of the heart.
3. Transposition of the great arteries (TGA) - the pulmonary artery and the aorta are reversed in position/connection to the heart.
4. Pulmonary Stenosis - narrowing of the pulmonary artery valve.
5. Disconnected Left Pulmonary Artery - the left branch is missing. This branch carries unoxygenated blood from the main pulmonary artery and takes it to the left lung to re-oxygenate the blood.

1 in 100 babies in the U.S. born with heart defect

One in every 100 babies is born with at least one congenital heart defect in the United States. Out of that number, one in four has a critical, life-threatening defect like Lukas. Unlike our situation though, many of those heart defects aren’t diagnosed until after a child is born and suffering health issues as a result. I count our blessings every day for the early detection of Lukas’ heart issues even though it ripped the joys of pregnancy from me.

Now I have the joy of watching him grow, though I worry every day about what his future holds and when the next surgery will be. 

I still have him here and I am so thankful for that, for him, and for all the doctors who saved his life along the way. 

‘My heart-warrior’

Lukas is my heart warrior, and he is a fighter! Being a mom of any child with health issues is not for the faint of heart because it weighs on you every second of every day, but you learn fast to cherish the small moments and make big memories along the way. 

So, in February, while all the hearts are in stores for Valentine’s Day, remember that it’s also Congenital Heart Disease month and take a moment to think of all the little ones born with broken hearts, repaired hearts, and those fighting for all the little ones to have the testing needed to prevent more babies from being born with missed congenital heart defects. 

Bryanne A. Tome is the publisher of Macaroni KID Hershey to Elizabethtown, Pa.