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What you need to know about Congenital Heart Disease and the Saving tiny Hearts Society fundraiser.

Chloe Manz

When Kelly Manz gave birth to her historic election day baby, she was excited to meet her daughter Chloe.  Kelly had a fast birth, however she noticed something was not quite right a few hours after Chloe's birth.  She "looked like a still doll" as she put it.  When she called nurses, they told her she had new mommy jitters.  Kelly called a second and third time until she finally demanded they take her newborn daughter back for the fourth time to make sure everything was alright.  That is when they discovered something was not quite right.  "I had no clue" says Manz,  "her apgar scores were 9 and 9, I felt great and no one detected a thing during during my ultrasounds."  Chloe was later diagnosed with Taussig-Bing Syndrome a form of a Congenial Heart Defect (CHD).  Taussig-Bing Syndrome is a combination of  Double Outlet Right Ventricle (DORV), Dextro-Transposition (d-TGA), Atrial Septal Defect (ASD), subpulmonic ventricular septal defect (VSD).  A very rare birth defect where the aorta and the pulmonary artery both exit from the right ventricle and thus blood is unable to be pumped to the lungs.  Chloe had to go to The Children's Hospital of Denver to have the eight-hour open heart surgery. She still recovering by attending physical and occupational therapy once a week.  Chloe will have to see a cardiologist for the rest of her life.

The Saving tiny Hearts Society was founded by a local Chicago family, Brian and Francie Paul after their son Joshua was born with America's number one birth defect, Congenital Heart Defect in 2005.  Now three years old, Joshua has undergone three open heart surgeries and the Pauls have been diligent activists in educating new parents about the disease.

Saving tiny Hearts Society is the only organization in the country that was formed for the sole purpose of raising funds for congenital heart defect research with 100% of general donations going directly to funding this research. There are no paid employees and they are ran entirely by dedicated volunteers. Furthermore, the organization’s overhead costs are fully funded by their Board of Directors and directed donations.

The following facts and statistics are care of the American Heart Association:

  • Congenital heart defects are America’s #1 birth defect. Nearly one of every 125 babies is born with a CHD (almost 1% of all children born each year!).
  • Congenital heart defects are the #1 cause of birth defect related deaths. 1 in 3 children who die from a birth defect have a congenital heart defect.
  • This year almost 40,000 babies will be born with a congenital heart defect.
  • In the U.S. twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined. Yet funding for research of pediatric cancer is 5 times greater.
  • From 1993 to 2003 death rates for congenital heart defects have declined by 31% due to advances made through research!
  • There is not yet a preventative cure for any type of congenital heart defect.
  • Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research.

Saving tiny Hearts will be having their 4th Annual Gala on Saturday, August 15 at the Hyatt Regency in downtown Chicago.  This year's gala contributions will directly fund cutting-edge research taking place in Chicago's own backyard.  Dr. Sunjay Kaushal, a cardiovascular-thoracic surgeon at Chicago's Children Memorial Hospital, is working on building various components of the heart, using cells from a patient's heart tissue.  This research facility is unique not only because if focuses on aiding children, but because it is the first research facility performing transitional research--from the clinic to the lab. 

Dr. Kaushal is definitely a local Chicagoan to be recognized.  He was also one of the doctors who performed heart surgery on Chicago Bears cornerback Charles Tillman's daughter in August of last year.  (note: this surgery addressed an issue other than CHD).

What does Saving tiny Hearts, The Paul family, Kelly Manz and other parents of babies with CHD want you to know?  Ask the right questions.  Most of the time, CHD is overlooked during the 20-week ultra sound.  The Pauls believe in the signifcance of being your baby's own advocate--so education is imperative and urgent.  Dr. Nina Gotteiner, a fetal/pediatric cardiologist at Chicago's Children's Memorial Hospital provides imperative information and a list of proactive questions that every expecting parent should know.  "By asking these questions, expecting parents and their doctor can proactively identify heart issues before birth, and as a team, work together to prepare for any potential heart issues that may arise after birth."  Here are the top five questions expecting parents should ask their doctor during the 20-week ultrasound exam:

  1. Do you see 4 chambers? 
  2. Do you look at the arteries or outflow tracks as part of your scan? *Note: Extremely important to focus on artery views.  CHD often missed if only a standard “chamber  view” is  performed. 
  3. Are the heart and stomach in correct positions?   Both organs should lay on the left side of the fetus.
  4. Is the heart rate normal?  Is the heart rate too slow (less than 100 beats per minute), too fast (over 200 beats per minute), or irregular?  *Note: A normal heart rate range for a fetus is 120-180 beats per minute. 
  5. Is the heart function normal?  Does the  muscle work normally? Is everything hooked-up correctly?

This is what families of CHD babies want you to know.  Knowledge is power.  Just by asking the right questions and being an advocate for your babies health is a step towards greater awareness.  

 You follow Chloe's story on her mom's blog, Confessions of a Momaholic

For more information about the gala:

4th Annual Saving tiny Hearts Gala
Saturday, August 15, 2009
Hyatt Regency, Chicago, IL

"Be faithful in small things because it is in them that your strength lies"  -Mother Theresa

Comments

  • toni 4 years ago

    Great article!! Thank you for bringing this to light!

  • garry allan 4 years ago

    excelent info.thank you to staff at yorkhill hospital.specil thanks to the surgen who saved my little nephew logans life garry allan.emense respect.

  • Jason 4 years ago

    Thanks for getting this information out there!

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