CHD Awareness Month

February is Congenital Heart Defect Awareness Month!!!  

Did you know:

Congenital heart defects are the most common type of birth defect, affecting approximately 40,000 babies in the United States each year.

Nearly one-third of birth defect-related deaths of infants are caused by congenital heart defects.

Each year, 1 out of every 120 babies is born with some type of congenital heart defect in the United States, and approximately 1 million babies are born with heart defects worldwide.

Single ventricle heart defects, such as hypoplastic left heart syndrome, are among the most complex and challenging forms of congenital heart defects to treat.

Congenital heart defects are approximately 60 times more prevalent than childhood cancer.

Approximately 1.4 million children and adults in the United States are alive today with congenital heart defects.

Carla was born with Hypoplastic Left Heart Syndrome (essentially half a heart).  HLHS is seen in 1 to 4 out of every 10,000 live births and is believed to make up 9% of all cases of heart defects present at birth.  No one knows for sure what causes HLHS, but it likely happens very early in pregnancy when the heart is developing, around 5-8 weeks of embryonic life.

In her short 5 years of life, Carla has endured, 

  • FOUR open heart surgeries....

The Norwood (3 days)

The Glenn (4 months)

A staph infection that required being reopened after the Glenn (4 months)

The Fontan (2  years 2 months)
Heart Transplant ( 5 years 7 months)
  • SIX Cardiac Caths (2 before surgeries, 1 to close her fenestration, 1 to investigate, 1 to remove the device and reopen her fenestration, and 1 to coil off bleeding blood vessels to the lungs and to do a biopsy.  She is scheduled for another on February 22nd and will have one yearly starting in November); 
After her first heart cath (4 months)

After hear second heart cath (2 years 2 months)
  • TWO Pleural Taps to remove  effusions ...

After her first Pleural tap (3 years 1 month)

With a tube in her chest, to let her chest drain ( 3 years 3 months)

  •  Plastic Bronchitis

One of the fist casts she coughed out after she was finally diagnosed with Plastic Bronchitis.  

Getting a Neb treatment and vest treatment, to help the Plastic Bronchitis (3 years 8 months)

One of her horrible casts...

Plastic Bronchitis... (3 years 11 months)  Carla spent NINE weeks in the CICU battling for her life... 

  • TEN or more bronchial scopes to remove casts caused by plastic bronchitis; 
  • FOUR PICC lines; 
  • She has spent at least SIX MONTHS inpatient at the hospital; 
  • Has had at least FOUR near death experiences;
  • Ended up with swelling on the brain that effected her mental capacity for a THREE WEEK period; 
  • HUNDREDS of blood draws; 
  • and COUNTLESS echo cardiograms; 

And, even though she received her perfect new heart in November, she is far from
FIXED.  Because getting a heart transplant is just trading one disease for another.  She will continue to be followed by doctors for the rest of her life.  She is on a number of meds, and will be for the rest of her life, to keep her body from rejecting her new heart. Her body may one day win the battle and it will cause her to need yet another transplant.  The medications they have her taking to prevent rejection have a whole slew of different side effects, including both kidney failure as well as cancer.  So no, she is NOT FIXED.  

Although, she is able to now live a somewhat normal life, with less daily side effects.  She can run and play without getting winded too quickly.  

She can feel her fingers and toes and they are not purple and clubbing.  

Her oxygen levels are finally in the 90s and will only get better as her body adjusts to her new heart.  She is no longer being suffocated by the plastic bronchitis casts forming in her lungs every time she catches a cold.  

So, she is better.  But not fixed.  

Please help spread CHD Awareness.  Before I had a baby with half a heart I knew NOTHING of CHDs.  I wasn't warned while I was pregnant and the doctors didn't make a big deal about the fact that they couldn't get a good picture of her heart during our 20 week ultrasound.  We were told that everything looked normal and were expecting a perfectly healthy baby girl... 
Before we found out she had HLHS...
Our first picture together :)

When the doctor explained that she had "HYPOPLASTIC LEFT HEART SYNDROME" I remember writing it on a tablet and thinking to myself "That doesn't sound so bad."  Little did I know, it was one of the most complicated heart defects a person could be born with.  

Love, Jen

1 comment:

Anonymous said...

Your story and journey is amazing. My daughter was born at 30 weeks in September 2005 with HRHS. She has a fenestrated Fontan and we just participated in the single ventricle survivorship program in Philadelphia where she has had all her surgeries. I have heard about the complications Fontan circulation can cause and it is terrifying. I am sorry your journey has led you to the complications, but the upside is your daughter is still fighting. God bless you all.

One SV mom to another.