Monday, February 8, 2016

One in One Hundred

This week, February 7 through 14, we observe Congenital Heart Defect Awareness Week.  Did you know that 1 of 100 children is born with a congenital heart defect.  That is a staggering number, but I feel like you really don't hear a lot about congenital heart defects.  Why? Who knows?

Congenital defects can involve the walls of the heart, the valves inside the heart or the arteries and veins around the heart.  Sometimes multiple things are affected.  Sometimes they are simple, they have no symptoms and require no treatment.  Sometimes they are life-threatening and require immediate intervention.
Allyn's heart defects were not discovered until she was two and a half years old.  And we kind of discovered them on a fluke.  She had suspected mitochondrial disease and we did an echocardiogram of her heart as a baseline.  She also had a radiologist reading an x-ray for her scoliosis and he noted an enlarged heart on his report.  Upon review of her echo, it was determined that she had an atrial septal defect (ASD), a hole between the top chambers of her heart, and a patent ductus arteriosis (PDA), a hole that should have closed shortly after birth when her body started pumping more blood to her lungs.

We did multiple echos and MRIs to determine where the holes where, how big they were, if they were causing other problems and what we could do to fix them.  Her ASD was a large and her PDA was small to moderate.  They were causing complications.  Her right side of her heart was very enlarged and because of the extra blood going to her lungs she had developed pulmonary hypertension.  She had a catheterization during which we attempted to close the holes.  Her ASD was too large.  We also discovered some issues with her mitral valve.

On December 16, 2015 my warrior had open heart surgery and became an official member of the Zipper Club.


She is doing so well now.  Her heart was definitely holding her back developmentally.  She is even gaining weight now.  Having something wrong with your baby is scary, but I am so glad this is something we were able to fix.

Looking back, she had symptoms that should have not been overlooked.  By all of her doctors,  And we have seen a lot.  I think because no one heard the classic murmur, the thought of checking her heart was overlooked.  But an ASD the size of her's does not generate the classic murmur sound due to the volume of blood going through.

Some of her symptoms were:

  • Failure to thrive.  She was not gaining weight.  In her first year of life she gained 6 lbs.  Most baby's triple their birth weight.  She did not even double her's.  She ate okay and we did volume transfer studies to see if she was getting enough milk.  She was.  
  • Difficulty feeding.  She would tire while nursing.  Nolan had always nursed like a champion and he would drink until there was no more.  She almost always fell asleep after 10-15 minutes of nursing. 
  • Sweating.  She was sweating all of the time.  When she nursed and when she slept, she would be drenched.  
  • Additionally, she had scoliosis and preauricular pits.  It's not uncommon for children with spinal or ear or kidney abnormalities have heart abnormalities.  
I mentioned all of these things to her doctors.  All of her doctors.  So it really was just gross oversight (and maybe a little negligent) that not until her geneticist in Chicago saw some issues on a muscle biopsy that an ultrasound of her heart was ordered.  

But now I know.  And I can tell you.  If your baby has any of these symptoms.  Or issues with pulse ox readings or rapid breathing or anything else, discuss with your doctor ordering an echocardiogram.  It's easy and a non-invasive.

If you want more information on congenital heart defects you can visit Mended Little Hearts.  And from my heart warrior to you, Happy Congenital Heart Defect Awareness Week.  


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