Every year, 100,000 babies don't make it to their first birthday because of CHD.
Rycker William Daniel Rohm-Deceder | Heart Warrior of the Week

Rycker William Daniel Rohm-Deceder is our Heart Warrior of the Week! Rycker’s Mom and Dad received some of the most devastating news a parent can get at their 24-week ultrasound – their baby had two holes in his heart that would need open-heart surgery to be repaired. His diagnosis would end up being atrioventricular septal defect (AVSD), but that wouldn’t keep him down!

Rycker came blazing into the world on July 19th, 2017, and has been a survivor ever since! He recently underwent open-heart surgery earlier this month to repair the holes in his heart and had another procedure just a few days later. While his recovery has been rocky, as so many are, he has continued to show strength and perseverance in the face of congenital heart disease.

Throughout his journey with CHD so far, Rycker has spent about 5 weeks in the hospital and will need to take medication to relieve the pressures in the right side of the heart for the foreseeable future.

chd, chd awareness, congenital heart disease

From Rycker’s Mom:

We worry that at any moment something could happen with his heart. We worry that because of his condition, he won’t have the chances and experiences that other kids have.  We constantly worry that he may not be included in things that others are, especially with him having Trisomy 21 (Down Syndrome). That’s why we decided to start the “I Wear Red for Rycker” campaign, so others would feel can join us on this journey!

Rycker inspires so many people around the world and he continues to inspire me every day. His sheer strength and determination makes me a stronger person, he has completely changed my life and my outlook on what being different means – it is not a curse but a blessing.

When we received his Down Syndrome and heart diagnosis, we were told it was completely random, but I believe God chose me to be Rycker’s Mommy.  As my favorite song says... “God Doesn’t make mistakes.”

About Rycker’s Heart

Anatomy: There are holes hole between the chambers of the right and left sides of the heart. The valves that control the flow of blood between these chambers may not be formed correctly as well.

Complications: Blood flows where it normally should not go and may also have lower than normal oxygen levels. Too much blood can flow to the lungs, this extra blood being pumped into the lungs forces them and the heart to work harder and may lead to congestive heart failure.

Symptoms: Babies with AVSD may not show signs or problems within the first few weeks after birth. When symptoms do occur, they may include: heart murmur, breathing problems, pounding heart, weak pulse, ashen or bluish skin color, poor feeding, slow weight gain, tiring easily, and swelling of the legs or belly.

Treatment: AVSDs usually require surgery where any holes in the chambers are closed using patches. If the mitral valve does not close completely, it is repaired or replaced

Prevalence: Approximately 1 in 2,120 babies are born with AVSD every year in the United States.

January 30, 2018 by Lani O'Gorman






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