You Just Don't Know

Congenital Heart Awareness Week

February 7th - 14th

2014

Picture of Kalvin at 6 months old taken by our very talented friend, Pam Trudel.

I still remember, as if it were yesterday, meeting the surgeon the night before Kalvin’s open heart surgery.  Kalvin was four days old.  I looked up at Dr. Pigula and asked the question I was so hoping he would shrug off, “What part of Kalvin’s surgery do you think will be the most challenging?”

But instead he looked directly into my eyes and humbly replied, “It is just a lot to do at once.”

I swallowed hard.

 

I had another request for the doctor.  I took a deep breath and asked, "May I see your hands? I held my hands out to him. He set his hand in mine. I squeezed it ever so gently.

 

I wanted to feel the hands that would determine my future. I wanted to get to know these hands. As I held them, I prayed that they would work their magic.  That they would be able to save my baby and my family. 

Kalvin was diagnosed at my regular twenty week ultra sound with one critical congenital heart defect (CCHD)-Transposition of the great arteries and three secondary- coarctation of the aorta, pulmonary stenosis and a ventricular septal defect.

 

There are no known CHDs in our family history.  I was taking pre-natal vitamins loaded with folic acid a full year before Kalvin was even conceived.  I did all the things I was “suppose to do” to assure a healthy baby.  I avoided all the things I was told to avoid to deliver a healthy baby.  Friends, you just don’t know.  There are no guarantees.

Those hands were able to work their magic.  They repaired my baby's heart.  There is no cure, but thankfully there are repairs. My baby is now eight years old. He is thriving. But not all babies do. There are far too many who have lost their battle.  And while Kalvin continues to thrive today, we just don't know about tomorrow.

This week is all about spreading awareness.  Spreading awareness to try and save lives and families.

Friends, please don’t be fooled. 

Don’t think just because you haven’t been affected by CHDs yet,  that you won’t. 

 

Many don't realize that CHDs can strike anyone's baby.  It may be your next child or your grandchild. Your niece or nephew.  Your neighbor or your best friend.  CHDs don’t discriminate. Yes, the odds are higher for families with a history of CHDs, but not much higher.

 

No one ever thinks it will happen to them until it does.

 

Please help spread the word.  Tell your pregnant friends and family members to be sure to ask their doctor for a pulse ox screening for their baby before they leave the hospital. 

Know the warning signs.  You don’t want to become one of the heartbreaking stories I have heard.  The stories of the babies who came home undiagnosed.  Crushing stories of beautiful healthy looking babies who passed away suddenly in their mother’s arms without any warning signs. 

Passed away from the same CCHD Kalvin was born with.

If only there was pulse ox screening a few years ago.  Then maybe, just maybe, sweet momma Kristine would have learned about CCHDs from her doctor instead of from the coroner.  Maybe baby Cora would be here today.  It breaks my heart to even think about it.

Please, spread the word. 

Learn the warning signs.




To learn more about beautiful baby Cora and all that her momma, Kristine, is doing to bring awareness to the world visit www.corasstory.com. 

I Am One

Our One in 1 Hundred

I AM ONE

Congenital Heart Awareness Week

February 7th - February 14th

2014

Kalvin was very excited to keep up the tradition of holding the big Red Sox hand forming the number one for his annual "I Am One" photo.  You can check out last year's picture here.

We are all trying to spread awareness this week.  Many don't realize that CHDs can strike anyone's baby.  It may be your next child or your grandchild. 

Kalvin was diagnosed in utero with one critical congenital heart defect (CCHD)-Transposition of the great arteries and three secondary- coarctation of the aorta, pulmonary stenosis and a ventricular septal defect.

Screening for Critical Congenital Heart Defects-Help Spread the Word

by James P Kyser, M.D.

Critical congenital heart defects (CCHDs) are serious structural heart defects that occur in a very small number of newborns (the CDC estimates about 7,200 each year in the U.S.). CCHDs are the culprit of about 30 percent of infant deaths.

CCHDs make up around 25 percent of all congenital heart defects, and often require surgery very early in life. The diagnosis of CCHDs requires the right kinds of screening. Without proper screening, newborns might be misdiagnosed or not diagnosed at all. CCHDs can be picked up on routine obstetrical ultrasounds that almost all pregnant women have. But not all CCHDs are obvious before or after delivery, and it’s possible that a newborn could leave the hospital without being diagnosed. The consequences of this can be disastrous. Depending on the type and severity of the CCHD, these defects can be fatal or lead to serious problems.

Utilizing pulse oximetry screening, more infants can be diagnosed with a range of CCHDs before they get sick. These screening looks at seven major defects: hypoplastic left heart syndrome, tetralogy of Fallot, pulmonary atresia with intact septum, transposition of the great arteries, total anomalous pulmonary venous return, truncus arteriosus and tricuspid atresia. Five additional, secondary, diagnoses include double outlet right ventricle, coarctation of the aorta, Ebstein’s anomaly, single ventricle and interrupted aortic arch.

While each of these defects is a mouthful to pronounce, the actual screening process for CCHDs is pretty simple. A portable, non-invasive device called a pulse oximeter can quickly measure the oxygen level in an infant’s blood. If an abnormal reading occurs, the infant is referred for an echocardiogram, or ultrasound of the heart, which is interpreted by a pediatric cardiologist. The heart may actually be normal, (a ‘false positive’ screen), but if it is abnormal then the pediatric cardiologist and the providers taking care of the newborn will come up with an action plan.

It’s important to note that this screening doesn't take the place of routine exams, and not all types of CCHDs can be uncovered with this screening. However, the actual cost of this screening is relatively low. Sometimes a simple $15 screening can save a life. 

We are trying to get pulse oximetry screening mandatory in every state.  Please be sure to ask for the screening for your baby and help us spread the word so that no baby will go home undiagnosed.

Read more: here.