I'm a Heart Mom

These days, I first and foremost see myself as a heart mom. No mater what else I do, whether I am in court being the attorney I am, whether I am on a date with my husband, whether I am out on the town with friends, I am first a heart mom.  Accordingly, I feel I must share something about congenital heart defects ("CHDs").  After all, my whole identity revolves around them.

CHDs are the most common birth defect.  At least one out of every hundred babies born in the U.S. has a heart defect.  That means every 13.5 minutes a baby is born with a defect in the U.S.

About 1/2 of those babies will need at least one invasive surgery to correct the defect.  Think about it.  Every half an hour a baby in the U.S. is born who will need an invasive surgery to fix their heart.  By invasive, I mean likely cracking open their ribs, and cutting through heart tissue.

One out of every ten babies born with a heart defect will not make it to their first birthday.  That means, every two hours and 12 minutes, a baby is lost to CHDs in the U.S.  That does not include all of the people over the age of one who die annually because of CHDs.

My daughter, the Dancing Queen, has a CHD.  Well, she has multiple.  She was born with:
  • Tetralogy of Fallot (extremely large hole between the lower chambers of the heart, aorta in the wrong place, and pulmonary valve all messed up);
  • Pulmonary Atresia (basically non-existent pulmonary valve and thread-like pulmonary arteries)
  • "Millions" of tiny collateral vessels running between the heart and lungs;
  • An abnormal tricuspid valve; 
  • Hypoplastic distal pulmonary arteries (the arteries in her lungs are crazy small and don't branch like they are supposed to, meaning her lungs are not developed correctly);
  • Funky branch pulmonary artery placement (instead of branching like a tree, hers branches like an octopus, making stinting--widening with mechanical device--impossible);
  • An open PFO (small hole in between the top chambers of the heart);
  • No PDA (usually keeps kids like my daughter alive after birth, but she didn't even have one); and
  • Dual LADs (her left anterior descending coronary artery--the widow maker--split in two itty bitty coronary arteries that run directly over the Dancing Queen's messed up pulmonary valve, making surgery much more difficult).
The Dancing Queen also developed pulmonary hypertension following her second major heart surgery.  Pulmonary hypertension is high blood pressure in the lungs, which damages them and damages the heart because it has to work harder to pump blood to the lungs

The Dancing Queen is six and has had three major heart surgeries.  The BT shunt at 7 days old, her first "full" repair or "tune-up" at 13 months, and a revision at 2.5.  She has had seven heart catheterizations, including coiling collateral vessels and stinting pulmonary arteries.  She takes about 15 medications a day.  And she wears oxygen at night.  The Dancing Queen has reached the end of science and the doctors no longer know how to help her.  Her heart is in failure and we were told in the spring of 2013 that she had three to five years left with us.  She was admitted into hospice at that time, but we continue to live a "normal" life.

The Dancing Queen is one child suffering from CHD.  While her defects are complex, she is not alone.

Unfortunately, awareness for CHDs is not commensurate with its prevalence in society.  Accordingly, research dollars are not there in the levels needed.  Congenital heart defects kill twice as many children as all pediatric cancers combined, yet funding for pediatric cancer research is five times greater!  I don't want funding to stop for childhood cancer, I just want funding for advances in treating CHD to be increased.

Doctors are working on amazing things, like growing a new heart from the person's own cells, so rejection would not be an issue.  They are developing techniques to fix some CHDs through catheterizations, rather than splitting ribs and cutting through the heart.  They are working on drugs to help people with pulmonary hypertension.  Yet, none of this is coming fast enough because the money is not there to get the research done.

More needs to be happen!

Click here for the Children's Heart Foundation, helping to fund CHD research.

Don't have money to donate?  Don't worry, you can still help!  Donating blood and becoming an organ donor is a great way to help the CHD community.  I have no idea how much blood and blood products the docs have given my daughter.  I watched transfusion after transfusion.  Her first fix was done with donated tissue from a child who tragically died too soon, but whose parents, in their greatest despair, decided to give the greatest gift possible:  the gift of life. Blood donation and organ/tissue donation have saved the life of my daughter and countless others. Think how good you will feel when you decide to help save a life.

Click here to find a blood drive near you. 

Click here to find out how to donate organs and tissue when you are done with them! 
Having a child with a CHD is like being given an extra sense---the true ability to appreciate life. Each breath, each hug, each meal is a blessing when you've watched your child live off a ventilator, trapped in an ICU bed, being fed through a tube. Each minute is a miracle when you've watched your child almost die and come back to you.
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