Cora's CHD Complex Diagnosis!!

     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!!

Torn Between........

     So the other evening I was heading upstairs to finish up the laundry for the night, exciting I know!  Any who, I reached the top of the stairs and heard Cora singing a Frozen song.  I stopped to listen, and watched through a mirror across the hall from the bathroom she was in.  The door bing cracked, I could see her brushing her hair and looking at herself in the mirror.  She stopped for a minute and touched the top of her scar on her chest while looking at herself in the mirror.   I wondered what she thought at that moment, and how many times she's done that?  I stood silent watching and listening, tearing up at the same time.

     I stood remembering that sweet little baby fighting for her life, to now being 13 and growing.  I was torn....part of me was exstatic she has fought for 13 years, but part of me didn't like the idea of her growing up anymore.   Selfish I know...everyone has birthdays and gets another year older, but......birthdays are not always joyous for me!

     I celebrate Cora's birthday and share her excitement each year as she talks about driving, prayinging for her future husband, school, finding a career one day....all the normal teen stuff.  However in the back of my mind I keep my reality check!    Cora is a child of the most high God.  She has been a miracle to myself and our family, she has beaten so many odds, but I know she is here only temporally, like us all.  However with her rare heart conditions her temporally could be sooner than many others. 

     

     I have had to overcome many obstacles having a CHD child many don't know or ever really understand.  Which is ok, I get it.  I have also had to face things I never knew existed until I had my Cora.  Honestly as she grows it gets harder.  Harder in the sense that new obstacles arise within her physically and mentally, but knowing in the very depths of my vaulted mind...her condition is so rare, and statics with her conditions are grim when looked at life span.

     Knowing I may only have a few years with her here on earth, I put my full love and faith into God.  What is to be will be!  I pray that God will continue to work within me making me strong and understanding.  I pray that Cora continues living life not knowing what I know about this....and that she continue to make plans and dream like any other healthy teenage girl!

Blessings until next time!

Drena

Her Heartfelt Tears!

   

     That moment when you hear your daughter through the phone crying hysterically from school, because she knows something inside isn't right, and she is scared OF death!

     From a very early age Cora knew she had a "special heart".  As the years have gone by Cora has learned more and more about what her body can and can not handle.  She faces challenges daily being different, which some days are difficult on her.....but there are 5 days a year where she is her happiest.  Every summer she gets to go to heart camp!  She tells me months in advance, and months after, that this camp makes her feel normal.  She is around other kids who have faced a lot of the same obstacles in their everyday life, and those 5 days in her year she gets to bond with others like her.

     These last two years have been more difficult for Cora.  She has lost several of her heart friends and  has learned more about her severe heart defect.  She has had some heart issues and she's recently become more and more concerned about death.  We have had several eposides over the past 6 months that have resulted me getting Cora from school to be monitored more closely.  But the other day tore at my emotions, and the strong Momma I strive to be for her, shoke me to the core!

     I was at work when my cell phone rang.  On the other end of my call is this hysterical little voice, crying and pleading in between breaths for me to come now.  My heart begins to beat rapidly as I try to make sence of what is trying to be said.  Finally I get Cora to stop sobbing to tell me something(s) aren't right inside her.  She has blurry vision, tingling in her arms, unable to feel her hands and feet.  I assure her I am on my way and told her to stay in communication with the nurse and office staff and if anything felt worse they were to call an ambulance.  Once I said that my poor daughter began sobbing again pleading.  

     Fast forward to when I arrived at the school.  I didn't walk quickly like I normally do when I am called, I ran....in high heels through the parking lot, I ran!!  When I first saw my baby girl she began crying again as I did.  I stood holding her, kissing her head.  I couldn't imagine what she was emotionally going through but felt her fear.  After a few minutes we sat in the office while I examined her more closely.  She said she could feel her feet and arms again, but her vision was still blurred and hands still tingled.  As the day went on she wound up getting a migraine which made her stomach upset.  She slept most of the day as she was monitored very closely.  As evening came she was back to her normal Cora.  Everything seemed better.  We don't know what caused her issues but we have a journal that documents all occurrences, so we will make sure to discuss this one with the cardiologists!

     The next day Cora thanked me for coming to get her so quickly!  She told me that she was so afraid her heart was failing her.  She said " Mom I know I probably won't live as long as my sisters, but I am not ready to go yet."  All I could do was touch her little face, whisper a I love you, fight back my own tears, and remember God is in control!!!

Blessings until next time!

Drena

Below are pics of Cora.  

*There is a pic below of a helmet over Cora's head.  Her oxygen stats were so very low she had to wear this helmet that assisted in getting enough oxygen.  

*There is another pic below of Cora with a pad over her chest.  After her first surgery we almost lost her, so they had to do another emergency surgery.  After the second surgery they decided not to close up her chest, leaving her heart exposed and easy to access if they needed to go back in.

*My favorite pic below.......getting to take my baby girl home one month, and two open heart surgeries later!!