My Child is 1 in 100

by Real Richmond Mom Lisa McGhan

A Journey in Congenital Heart Disease

Discovering we were expecting our fourth child, was both exciting and nerve racking. Everything seemed to go perfectly during the pregnancy, even though I was pretty sick through most of it. Our ultrasound was a little hazy, so we had to have one that was in more detail.   No problems were detected.  The doctor said he was 99% sure everything was fine, but he hesitated to say 100% because something could always go undetected. Machines are not perfect after all. On March 9, 2010, Caitlynn arrived perfectly healthy for all we knew. Four days later we brought her home. She went to her one month appointment and screamed her head off just enough that the doctor finally said he was pretty sure her heart was beating even though he could not hear it. She was growing and thriving.  She was an easy baby.

On her two month birthday, I took Cait to church for the first time. The next night Cait woke up with a croupy sounding cough. I called the on-call line for our pediatrician. The nurse advised us take her to the ER. Everything checked out and our two month old had a rare case of croup, mostly unheard of in children that young. We followed up with her doctor. While listening to her heart he asked, “We knew she had a VSD, right?” The look on my face must have clued him in that I had no idea what a VSD was or that my child had one.

That was the day our Congenital Heart Defect/Disease (CHD) journey began. The doctor explained that he thought my baby might have a small hole between the lower chambers of her heart causing a swoosh sound when listening to her heart. He recommended a visit with a pediatric cardiologist.

Cait went through both an electrocardiogram (EKG) and an echocardiograph (ECHO). The ECHO, much like an ultrasound revealed two congenital heart defects; one being less serious than the other but neither life threatening. Cait’s diagnosis of both Ventricular Septal Defect (VSD) and Patent Ductus Arteriosus (PDA) was scary and yet refreshing.  These are two of the least complex CHD issues. Cait’s VSD is low in her heart, between the two lower chambers and is so tiny that it will most likely never require closing and may close on it’s own over time.  Her PDA is very narrow, which means it tried to close and may still be trying.  It is small enough that it will not require the procedure to close it.

If only all who are diagnosed with CHD were to receive the same news, but sadly that is not the case. Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD. CHDs are the leading cause of all infant deaths in the United States.  Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood. More than 50% of all children born with CHD will require at least one invasive surgery in their lifetime. There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.  While CHD is so prevalent, research and awareness remain grossly underfunded.

CHDs are not always detected during pregnancy or when a newborn arrives in the nursery for screenings shortly after birth.  Caitlynn was one who was not diagnosed at or before birth.  Her diagnosis came two months later.  Kristine McCormack’s daughter was not diagnosed at birth either.  Kristine took Cora home, a happy healthy baby girl.  Cora passed away in her mother’s arms just days later.  It was then that they discovered Cora had an undetected complex CHD.  Kristine started a blog called Cora’s Story. http://www.corasstory.org/ It is there that Kristine urges moms-to-be to make sure their child has a pulse oximetry screening prior to being discharged from the hospital.  This simple, inexpensive, non-invasive test can and has saved lives. The US Secretary of Health and Human Services is soon expected to formally adopt the recommendation of its federal advisory committee on pulse oximetry screening for critical congenital heart disease. However, until it is implemented in all hospitals, parents need to make sure they request this test to be done.

Governor McDonnell has signed a proclamation declaring February 7-14 as Congenital Heart Defect Awareness Week.  There are many ways you can help raise awareness and support vital research for CHD.  Build-A-Bear Workshop has partnered with The Children’s Heart Foundation for the second year.  During the month of February you can go to any Build-A-Bear Workshop or even shop on line and you will have an opportunity to make a $1 minimum donation to The Children’s Heart Foundation, an organization that raises money to fund the most promising research to advance the diagnosis, treatment and prevention of congenital heart defects.

Mended Little Hearts of Central Virginia, a support organization for CHD Families, has partnered with Sweet Spot Candy Shop in Downtown Short Pump for a poetry contest.  Submit a poem along with a $1 donation to Sweet Spot by February 12. The winning poem will be announced on February 14 and will win the “World’s Largest Gummy Bear.”  Some schools will be participating in events to raise awareness and funds for CHD organizations through carnation sales, wear jeans for CHD programs and more.

Coming in April, Catwalk for Kids Richmond 2011, will be bringing an event to Richmond to raise money for the Children’s Hospital of Richmond, Pediatric Cardiology department.

To get involved in CHD Awareness or for more information on CHD, please contact Lisa McGhan at chfva@childrensheartfoundation.org
The facts in this article can be found on the website for The Children’s Heart Foundaiton: http://www.childrensheartfoundation.org
For a list of CHD symptoms please visit: http://tchin.org/aware/symptoms.htm

3 COMMENTS

  1. The first picture is Cora McCormick, daughter of Kristine, who lost her battle with CHD before she was ever diagnosed? :(

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