Everyone is unique, right? That is one of the glories God gives us as humans! We embrace it and are proud, wearing it like a badge of honor!
Heart children are no different....they are unique like others because God made them...but...they surpass uniqueness and move into a category many only have heard of, or read about. Unless of course.... you're a proud parent of a heart child. These little unique beings are true MIRACLES!!
My daughter, who is now an official teen, is a COMPLETE miracle!! Without the intervention of God's hands my CHD daughter wouldn't have lived but 24 hours. As I watch my miracle continue to grow I am amazed at The Lord's work.
So many family and friends know Cora has a severe CHD, but that's about it. Some......I am sure don't really get it, nor even remember because she appears physically to be healthy. So in hopes of educating I will open up and share all of the rarities my MIRACLE daughter posses.
This is my CORA!!!!!!!!!!
* AVSD: Atrial Ventricular Septal Defect. (This is a CRITICAL CHD). The holes between the upper chambers of the heart allow blood to mix.
* Hetrotaxy Syndrome: Heterotaxy syndrome is a disorder that results in certain organs forming on the opposite side of the body. Heterotaxy has been known to affect the development of the heart, liver, lungs, intestines, and spleen. Cora was born with her organs all on the opposite sides, also known as Situs Inversus Totalis. Cora's heart isn't on the left side like everyone else's. Her heart is just slightly off center. We were told if her heart was in the center of her chest she would have died. There isn't any baby who has been born with their heart in the center of their chest and lived. The heart isn't able to pump everything properly with the heart in the center. It is simply to much strain.
* D-TGA: Dextro Transposition of the Great Arteries. (This is a CRITICAL CHD). Two main arteries carry blood out of the heart, main pulmonary artery & aorta are transposed.
* Situs Inversus Totalis: All of Cora's organs are on the opposite side. Her heart is also not on the left. It is slightly off center, which is EXTREMELY RARE! If her heart would have been less than an inch to the right, hitting the middle of her chest, she would have died within hours because the heart can't pump all that is needed to and from properly. No child on record has ever lived being born with their heart in the center of their chest. Only a minuet few children have been born with their heart like Cora's, slightly off center.
* Pulmonary Artesia: Blue blood can't flow forward from the right ventricle to the lungs to get oxygenated. A cluster of associated defects affects 1 out of every 10,000 babies who have this.
* Common Atrium: Characterized by complete absence of the atrial septum with two normally located atrial appendages.
* Bilaterial SVC: Superior Vena Cava:
* No Spleen: Cora was born without a spleen. The effect of not having a spleen is that you can be vulnerable to most infections. This is because the spleen helps to protect against infections. As the blood passes through it, special cells kill germs that may be present. So in essence Cora doesn't have much of an immune system.
* Twisted brain stem: Cora's brainstem being twisted affects her cognitive learning, social interactions, thought processes, and learning.
* HRHS: Hypoplastic Right Heart Syndrome: THIS IS MORE RARE THAN Hypoplastic Left Heart Syndrome. HRHS is a congenital heart defect in which the right ventricle of the heart fails to grow and develop appropriately. This condition needs immediate and emergency treatment, as the heart begins to fail almost immediately after birth.
* ADHD-inattentive type: ADHD inattentive type children are generally less disruptive and active than those who have the predominantly hyperactive-impulsive variation of the disorder.
Symptoms of inattentive type--which Cora has all are:
* missing details & becoming distracted easily.
* trouble focusing on the task at hand.
* becoming bored quickly.
* difficulty learning or organizing new information.
* trouble completing homework or losing items needed to stay on task.
* becoming confused easily or daydreaming frequently.
* difficulty following instructions! and seeming not to listen.
* processing info more slowly than peers.
There are a few other possible diagnosis that have recently been founded during her neurology clinic visits, but until they are finalized......well......this is enough!
Blessings until next time.
Drena
Cora Evette13 years old!!
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