As mentioned on the page “My Inspiration,” my little M was born with some medical issues, a Congenital Heart Defect (CHD). M was born with Transposition of the Great Arteries (TGA). TGA is when the main arteries, the pulmonary and aorta arteries are switched. When this happens, the blue blood and red blood is not mixing so oxygen is not getting pumped throughout the body. It requires open heart surgery.

We did not know of M’s CHD before he was born. I had ultrasounds at the appropriate times and his heart rate was perfectly fine, no reason for concern. When babies are inutero, there is a hole in the heart called the foramen ovale that allows blood to enter the left atrium from the right atrium, when the baby is born, this hole closes up and the arteries are left to do the job (there is a CHD when the hole does not close on its own). Because of this hole, there was no cause for concern before he was born. They would have had to do a fetal echocardiogram to diagnose the TGA before brith, they had no reason to do this since his heart rate was fine.

Once M was born, he was given a medication to keep the foramen ovale open, then he was life-flighted to another hospital. At the 2nd hospital he received a balloon catheter to keep the hole open. However, this 2nd hospital did not have a pedatric cardiac surgeon, so he was life-flighted again to a 3rd hospital. The 3rd hospital was Nemours/Alfred I. duPont Hospital for Children in Wilmington, DE. He was placed into the Cardiac Intensive Care Unit (CICU). He wasn’t even 2 days old at this point, and I was still in the original hospital that I delivered at, recovering from a c-section. My husband was able to accompany him to both hospitals and in Delaware was able to get set up at the Ronald McDonald House (a phenomenal organization that provided us with 3 meals a day, a room to stay in, and so much more). I finally got to join M and the Hubs on January 9, 2012 in Delaware. 

When M was 6 days old (Friday, January 13, 2012), he received his open heart surgery (OHS), an arterial switch. It went really well and since his OHS, all of his echos have looked good. We are really lucky, M’s prognosis is good and he should be able to lead a normal, long, healthy life. 

Nemours hospital was such an awesome experience, for hospital experiences anyway. Once M was transitioned onto the step down unit (about a week after his OHS), we were able to stay in the hospital room with him, an amazing experience. They educated us and allowed us to be fully immersed in his care. The hospital is truly family oriented, M wasn’t just a patient number, he was a child with parents who were included each step of the way.

When M was 3 1/2 weeks old he was transferred back to the 2nd hospital, to the NICU there. It was closer to home and since his heart stuff was under control and his biggest issue was feeding, we traveled back to PA. That’s, in a nut shell, the story of M’s CHD. His story continues, but that’s on another page (My Tubie).

Congenital Heart Defects: Facts and Stats

  • CHDs are the #1 birth defect
  • Approximately 1 out of 110 babies are born with a CHD
  • CHDs are the leading cause of infant deaths in the USA
  • Over 50% of children born with a CHD will have at least one, if not multiple invasive surgeries in their lifetime
  • There are more than 40 (known) types of CHDs
  • Approximately 40,000 babies are born in the US with a CHD each year
  • Thousands of those babies will not reach heir first birthday or adulthood
  • Most children/adults with complex CHDs also have neurological and developmental disabilities
  • There are an estimated 2,000,000 CHD survivors in the US.
  • The cost for inpatient surgery to repair a CHD exceeds $2.2 billion a year
  • In the US, twice as many children die from CHDs each year than from all forms of childhood cancer, combined. Yet funding for pediatric cancer research is 5 times higher than funding for CHDs.
 
CHD Resources:
 
Click on any of the links in the above post for more information. For even more information go to: