Every year, 100,000 babies don't make it to their first birthday because of CHD.
Daniel Gabriel Blackburn | Heart Warrior of the Week

Your Heart Warrior of the Week is a very special Heart Angel, Daniel Gabriel Blackburn. Daniel’s parents were expecting a routine appointment at their 20-week ultrasound but instead they got the news that no expecting parent ever wants to hear – there was something wrong with their baby’s heart. 

The ultrasound tech saw something off on the ultrasound and they were sent for a fetal assessment where it was suspected that their unborn baby had hypoplastic left heart syndrome (HLHS). A pediatric cardiologist confirmed this diagnosis, but it wasn’t until Daniel was born on December 15th, 2016, that they found out Daniel also had total anomalous pulmonary venous return (TAPVR).

Daniel fought bravely for all 33 hours of his short life, but left this Earth on December 16th, 2016. His Mom, Felicia, says she is so proud of how his short life inspired so many. She describes her baby boy as strong brave, strong and wise beyond his years, adding, “I could tell by looking in his eyes he was an old soul. He never made a sound while he was alive but he spoke volumes, and his memory will continue on as long as I live.”

About Daniel’s Heart Defects

Hypolastic Left Heart Syndrome

Anatomy: In an HLHS heart, most of the structures of the left side of the heart are underdeveloped or missing altogether.  This includes the left atria, left ventricle, aorta and mitral valve. Basically, they are born with half a heart.

Complications: Because the mitral valve is very small or not developed at all, this prevents blood from entering the left ventricle. As a result, blood is diverted to the right atrium through an atrial septal defect (hole in the heart). Because the left-sided structures of the heart are essentially missing, the right ventricle collects both oxygen-rich blood from the lungs and oxygen-poor blood from the body. It is also responsible for pumping blood to both the lungs and the body. Since deoxygenated and oxygenated blood are mixing and being pumped to the body, HLHS babies are cyanotic (blue in color) and have low oxygen levels.

Symptoms: Rapid breathing or shortness of breath, rapid heartbeat or pounding heart, poor suckling and feeding, cold extremities, blue color of the skin, lips and nailbeds (cyanosis), overall body weakness.

Treatment: HLHS is treated with a three-part open-heart surgery called the Norwood, Glenn and Fontan procedures.  HLHS is sometimes treated with a heart transplant.

Prevalence: HLHS accounts for approximately 2-3% of all congenital heart defects. It occurs in 2-3 out of 10,000 live births worldwide.

HLHS with Intact Atrial Septum
With partial or complete closure of the atrial septum, flow is diverted away from the left atrium and left ventricle. This has little effect while the child is still in utero, but at birth, elevation of blood pressure in the left atrium due to IAS causes a shift in the distribution of blood flow away from the blood vessels of the lungs, resulting in dangerously low oxygen levels in the blood.

Total Anomalous Pulmonary Venous Return

Anatomy: This is when all four pulmonary veins do not connect normally to the left atrium. Instead they drain to the right atrium. There are three different types of TAPVR, based on how and where the pulmonary veins drain to the heart:

Supracardiac Total Anomalous Pulmonary Venous Return
The pulmonary veins drain to the right atrium via the superior vena cava. The pulmonary veins first come together behind the heart and then drain upwards to an abnormal “vertical vein.” This vertical vein joins the innominate vein which connects to the right superior vena cava and drains to the right atrium.

Cardiac Total Anomalous Pulmonary Venous Return
The pulmonary veins come together behind the heart and then drain to the right atrium through the coronary sinus. The coronary sinus is the vein that normally returns blood from the heart muscle itself, back to the right atrium after its oxygen has been depleted. The coronary sinus drains directly into the right atrium.

Infracardiac Total Anomalous Pulmonary Venous Return
The pulmonary veins drain to the right atrium via the hepatic (liver) veins and inferior vena cava. In this type of TAPVR, the pulmonary veins join together behind the heart and then typically drain downwards, connecting to the liver's portal vein system. They then drain through the vascular bed of the liver and enter the right atrium from the hepatic veins.

Complications: Due to this abnormal connection, oxygenated blood returning from the lungs mixes with deoxygenated blood returning from the body, resulting in low oxygen saturations within the entire body.  All types of total anomalous pulmonary venous return have to have an atrial septal defect (ASD). This hole will allow some of the oxygenated blood that has entered the right atrium from the pulmonary vein to go across to the left atrium and out to the body.

Symptoms: Bluish in color (cyanotic), rapid breathing, sharp retractions of the rib cage muscles, or heart murmur.

Treatment: TAPVR is corrected with open-heart surgery shortly after birth in which the doctor places the pulmonary veins in their proper positions. Some TAPVR patients receive a balloon catheterization before open-heart surgery to increase the size of the VSD, allowing more oxygenated blood to mix with the oxygen-depleted blood.

Prevalence: This is a very rare CHD, occurring 6.8 out of every 100,000 live births.

February 15, 2019 by Lani O'Gorman

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