Every year, 100,000 babies don't make it to their first birthday because of CHD.
congenital heart disease, CHD

“My biggest worry for Liam is not knowing. Not knowing if his heart will just start to fail out of nowhere. I worry he won't be like most kids growing up. I worry that he will develop chest pains and be held back from things he enjoys doing. We will always treat him like he is a normal kid despite everything he will go through having CHD, I would never let him feel like he isn't just like all the other kids.”

Liam is our Heart Warrior of the Week, those words are from his Mom who fears the uncertainty of her son’s future because of his diagnosis with hypoplastic left heart syndrome (HLHS). He was diagnosed with HLHS at 20 weeks gestation and came into the world ready to fight on December 28th, 2016.  Doctors discovered he also had pulmonary stenosis during a catheterization procedure in preparation for one of his open-heart surgeries.

At just two weeks old, Liam had his Norwood procedure, which is the first in a series of three to treat HLHS. He then had surgery for a g-tube placement so that he could gain weight in preparation for his Glenn procedure. This was success and at three months old, the second surgery in the sequence was completed. He also had a plication surgery due to his diaphragm being paralyzed and has underwent a total of three catheterization procedures to observe his heart.

Due to the complex and risky nature of HLHS, Liam has only been home for 30 days out of the entire seven months since he’s been born. He is on several medications for pain, blood clots and stomach issues. The hope is that all of these will be temporary for this Heart Warrior. It's hard to say where Liam will be from a physical stand point, he has a lot to accomplish physically as of right now. His parents are hoping he will be able to play sports and live an active lifestyle one day. 

chd support, congenital heart disease support, CHD

“My son is the biggest inspiration. But what inspires me the most is his will to FIGHT! Even when CHD tries to knock him down, sometimes I see defeat in his eyes yet he keeps fighting. He never stops. I have no idea how he does it. After everything he's been through he remains strong. He is trying to prove to everyone that he has what it takes to be here. And my God, that is the most inspiring thing to see in such a tiny little person.

Liam is the greatest little boy I've ever met. He has changed my life and has made me value things so much more. He’s taught me to old onto your loved ones closely and to never take a single day for granted. He is so sweet and kind. He loves to snuggle when he is upset and loves to be talked to. Being a Heart Mom is incredibly challenging but I know I was meant to fight this with my son. I was chosen because I'm strong enough to handle it. I wouldn't change a single thing.”

Liam’s Mom describes him as a strong-willed warrior, which not coincidentally is the definition of his name.  We think that name suits him very well!

About Liam’s CHD

hlhs

With this defect, the entire left side of the heart (aorta, aortic valve, left ventricle, mitral valve) is underdeveloped, essentially the child is missing half of their heart. In a healthy heart, the right side of the heart pumps oxygen-poor blood from the heart to the lungs while the left side of the heart pumps oxygen-rich blood to the rest of the body. When a baby is growing in a mother’s womb during pregnancy, there are two small openings between the left and right sides of the heart. Normally these openings will close a few days after birth.  In babies with HLHS, the underdeveloped left side of the heart cannot pump oxygen-rich blood to the body properly. During the first few days of life with HLHS, the oxygen-rich blood bypasses the poorly functioning left side of the heart through the two openings. However, when these openings close, it becomes hard for oxygen-rich blood to get to the rest of the body.

If undiagnosed in utero, the child may seem healthy for the first few days of life before exhibiting side effects like rapid or strained breathing, trouble feeding, and an ashy appearance. Without treatment in the first days or weeks of life, this condition is usually fatal. About 1 out of every 5000 babies are born with HLHS every year.  Those who survive the complicated process of mending a heart with HLHS will require lifelong cardiology care.

 Source: cdc.gov

Comments

Julie White

Julie White said:

I recently found your organization, and I am so inspired by your work to raise awareness of CCHD. My husband and I lost our firstborn son 36 years ago to HLHS at 6 weeks of age. That many years ago, it was rare for cchd to be diagnosed in utero, and our options for his care after diagnosis were very limited. We were told “the only thing that would help your son is a heart transplant, we don’t do heart transplants in babies”. He lived for 2 weeks following his diagnosis. Time has truly eased our grief at his loss, but the pain never fully goes away. I commend you in your involvement in educating the public and advancing this cause!!

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