CHD Awareness Week

by Megan

February is “heart” month in our house. Well, every month is “heart” month but in February we really celebrate. We celebrate love and special hearts. Today we kicked off Congenital Heart Defect (CHD) Awareness Week!!! I challenged my friends and family on facebook to “blow up” my facebook page with pictures of them wearing red. I was BLOWN away!! Yay! I loved seeing all the red of FB. It made my heart swell all day long. Thank you so much for supporting Heart Warriors and Heart Angels everywhere.

Here are some pictures and CHD facts.

Eli is my Heart Warrior. Everyday, I am truly in awe of what God has done for him. He is my Heart Warrior and Miracle Baby.

Eli is my Heart Warrior. Everyday, I am truly in awe of what God has done for him. He is my Heart Warrior and Miracle Baby.

Congenital Heart Defects are America’s #1 birth defect. Nearly 1 in every 100 babies are born with a CHD. CHDs are the leading cause of infant deaths in the U.S.

I wore red to support my Heart Warrior and all the other Heart Warriors and Heart Angels.

I wore red to support my Heart Warrior and all the other Heart Warriors and Heart Angels.

There are an estimated 2,000,000 CHD survivors in the United States.

We are sportin' our red!!

We are sportin’ our red!!

HLHS comprises 4-8% of all congenital heart defects. It occurs in up to four out of every 10,000 live births. HLHS appears slightly more often in boys than in girls. Beyond family history, there are no clear risk factors for it, and no known way to prevent it.

Jade & Ailee - Ailee is a Heart Warrior. She is such a little cutie! Jade is an amazing mom who works so hard to bring CHD awareness to those around her. She's an inspiration!

Jade & Ailee – Ailee is a Heart Warrior. She is such a little cutie! Jade is an amazing mom who works so hard to bring CHD awareness to those around her. She’s an inspiration!

A healthy heart is a strong, muscular pump that pushes blood through the circulatory system to carry oxygen and nutrients to the body. The heart has four chambers — two on the right and two on the left. Blood is pumped through these chambers and regulated by valves that open and close like tiny doors, so that blood can move in only one direction.

Franki, Ollie and Nichole - Ollie is a Heart Warrior! Nichole and I work together but formed a strong bond when Ollie needed to have his heart surgery. Yay for warriors!!

Franki, Ollie and Nichole – Ollie is a Heart Warrior! Nichole and I work together but formed a strong bond when Ollie needed to have his heart surgery. Yay for warriors!!

After its trip through the body to deliver oxygen, blood is a blue color because it’s no longer oxygen-rich. The blue blood returns to the heart through the right chambers and is pumped through the pulmonary artery into the lungs. In the lungs, it picks up more oxygen and becomes bright red. It then goes back through the pulmonary vein to the left chambers and is pumped through the aorta and out into the body again.

Cameron - I just met Cameron's mom through FB. He has the same heart condition as Eli, HLHS.

Cameron – I just met Cameron’s mom through FB. He has the same heart condition as Eli, HLHS.

If your baby is born with HLHS, the chambers and arteries on the left side of the heart are small and underdeveloped with valves that don’t work properly. Since the left side can’t pump effectively, the right side of the heart must take on double the work and pump to both the lungs and the rest of the body.

3.5 of the 5 Drew's (baby is the belly!). They are loving and supporting Eli all the way from Jackson, MN. Yay!!

3.5 of the 5 Drew’s (baby is the belly!). They are loving and supporting Eli all the way from Jackson, MN. Yay!!

A newborn baby with HLHS may appear to be well during the first hours or even days of life. However, a day or two after birth, the natural openings between the right and left sides of the heart close. That is normal, but in a baby with HLHS, it can be fatal because it leaves the overworked right side of the heart no way to pump blood to the body.

The last 1/5 of the Drew's, Chris. Thank you for loving and supporting CHD Warriors!!!

The last 1/5 of the Drew’s, Chris. Thank you for loving and supporting CHD Warriors!!!

Hypoplastic left heart syndrome occurs during the first eight weeks of fetal growth when the baby’s heart is developing. The cause is unknown. However, if your family has one child with HLHS, the risk of having another with the same condition is higher than the recurrence rate for other congenital heart defects. This may mean genetics play a role. It’s possible for a fetus to be diagnosed with HLHS through an ultrasound exam as early as the first trimester.

DJ - This little dude has a special heart too!!

DJ – This little dude has a special heart too!!

Usually, babies born with hypoplastic left heart syndrome are critically ill right away. Signs and symptoms vary, but may commonly include: cyanosis: A blue (or gray) tone to the skin, lips, or nails; pale, cool or clammy skin; difficulty breathing; accelerated heart rate; fainting or loss of consciousness; poor feeding; cold hands and feet; lethargy.

My sweet, beautiful, pregnant cousin - Elizabeth. She has loved Eli, from the south, since before he was born.

My sweet, beautiful, pregnant cousin – Elizabeth. She has loved Eli, from the south, since before he was born.

If the natural connections between the heart’s left and right sides are allowed to close naturally a day or two after birth, the child may go into shock. Symptoms of shock include: dilated pupils; eyes that seem to stare blankly; slow and shallow (or very rapid) breathing; a weak and accelerated pulse; pale, cool, and clammy skin.

The Wood's - Melissa and I have been friends since...forever!! She and her sweet babes supported Eli and all the other Heart Warriors and Angels by wearing their red.

The Wood’s – Melissa and I have been friends since…forever!! She and her sweet babes supported Eli and all the other Heart Warriors and Angels by wearing their red.

A clear diagnosis is the first step to treatment. A pediatric cardiologist (a children’s heart doctor) can use several tests to confirm your child’s diagnosis. These tests may include:

  • Chest X-ray: A beam of electromagnetic energy creates images on film that show the inside structures of your baby’s body.
  • Cardiac magnetic resonance imaging (MRI): This test produces a three-dimensional image of the heart so you’re your child’s doctors can examine blood flow and functioning of the heart as it is working.
  • Electrocardiogram (ECG or EKG): This test, conducted by attaching patches with wires (electrodes) to your baby’s skin, records the heart’s electrical activity. It will show if there are abnormal heart rhythms (arrhythmias or dysrhythmias) and/or stress on the heart muscle.
  • Echocardiogram (Echo): This test uses sound waves to make a moving image of the heart on a video screen. It is similar to an ultrasound, If your baby has HLHS, the echocardiogram may show a smaller than normal left ventricle and aorta, as well as a reversed blood flow. The echo can also identify any related heart defects.
  • Cardiac catheterization: During this procedure, your doctor inserts a thin flexible tube (a catheter) into a blood vessel in the groin, then guides it up to the inside of the heart. A dye injected through the catheter makes the heart structures visible on x-ray pictures. The catheter also measures blood pressure and oxygen levels.

Parker - this little man went through a lot just to be born. But he's a fighter! We will forever remember and love his sweet twin, Jamison, who earned his wings too soon.

Parker – this little man went through a lot just to be born. But he’s a fighter! We will forever remember and love his sweet twin, Jamison, who earned his wings too soon.

For babies born with HLHS, there are two treatment options: a heart transplant, or far more commonly, a series of surgeries to reconstruct the heart to compensate for the otherwise-fatal defects. The procedures, which Children’s helped pioneer, are:

  • A Norwood operation: Performed within two weeks of birth, this surgery reconstructs and reconnects the aorta and the lower right chamber of the heart. Your baby’s skin will still have a blue tone, as oxygen-rich and oxygen-poor blood continue to mix in the heart.
  • A bi-directional Glenn or hemi-Fontan: Performed between four to six months of age, this surgery reduces the burden on the heart’s right chamber. After the surgery, blood with more healthy oxygen will be pumped to organs and tissues throughout the body.
  • The Fontan procedure: Performed between 18 months and three years of age, this surgery stops oxygen-rich and oxygen-poor blood from mixing in the heart. After the surgery, your child’s skin will no longer look blue.
Mike & Ryan - Mike and I have been friends since...forever! Thank you for supporting Eli and Heart Warriors and Heart Angels everywhere!

Mike & Ryan – Mike and I have been friends since…forever! Thank you for supporting Eli and Heart Warriors and Heart Angels everywhere!

After surgery or a transplant, your baby will need lifelong follow-up care with a heart doctor who specializes in congenital heart disease. Some medication may be necessary to regulate heart function. If your baby receives a heart transplant, he or she will need to take anti-rejection medication for the rest of his or her life to combat rejection of the new heart.

Later in life, children who have had either treatment for hypoplastic left heart syndrome sometimes tire easily from exercise, experience heart rhythm abnormalities or blood clots, or have attention deficit hyperactivity disorder (ADHD).Your child’s cardiologist may also recommend that your child limit physical activity and take antibiotics before dental procedures to prevent infections.

Us - we are so incredibly blessed. Thank you Jesus for our Heart Warrior.

Us – we are so incredibly blessed. Thank you Jesus for our Heart Warrior.

Thank you so much for the overwhelming support and love you have shown us, especially Eli. There are Heart Warriors and Heart Angels everywhere. Thank you for support CHD Awareness!

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