If you’ve been following this blog, or if you’re involved with ANY of the TTTS Facebook groups, you know Marcel and his adorable girls, Kiera and Charlie.
If you’ve been following their story, you know that Kiera had to recently have open heart surgery to fix her heart from Congenital Heart Disease (CHD).
Today is International “Wear Red Day”
The goal is to bring awareness and raise money for CHD and healthy hearts / heart disease. Marcel is hard at work raising funds for the children’s heart hospital where Kiera was treated. And I thought, since TTTS causes many heart issues for babies, we should help bring awareness too. In fact, my Kathryn, was born with Critical Congenital Heart Disease (CCHD) because of TTTS. The valves only worked on one side of her heart – Pulmonary Artresia. This caused hydrops and her eventual demise after two days.
When it comes to babies and research about healthy babies, I usually turn to the March of Dimes for information. So I’m going to share some information from their page on Congenital heart defects and CHD.
Congenital heart defects and CHD
Congenital means present at birth. Congenital heart defects are heart conditions that a baby’s born with. These conditions can affect the heart’s shape or how it works, or both.
Congenital heart defects are the most common types of birth defects. Birth defects are health conditions that a baby’s born with that change the shape or function of one or more parts of the body. They can cause problems in overall health, how the body develops, or in how the body works.
Critical congenital heart disease (also called CCHD) is group of the seven most severe congenital heart defects. They may affect the shape of a baby’s heart, the way it works, or both. Babies with CCHD need treatment within the first few hours, days or months of life. Without treatment, CCHD can be deadly.
Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. About 4,800 babies each year are born with CCHD. Many heart defects don’t need treatment or can be fixed easily. But some, like CCHD, can cause serious health problems or death.
If your baby’s health care provider thinks your baby has a congenital heart defect or CCHD, she can refer you to a pediatric cardiologist. This is a doctor who treats babies and children with heart problems.
You can learn about how heart defects affect your baby and the other common heart defects and their treatments on the March of Dimes Congenital Heart Disease webpage.
Many preterm babies (which the majority of TTTS babies are preemies) may have some of the more common congenital heart defects. The two most common (and usually self correcting) for preterm babies are:
- Patent ductus arteriosus (also called PDA). The ductus – the connection between two major blood vessels near the heart- is open when a baby is in the womb. If the ductus doesn’t close properly after birth, a baby can have breathing problems or heart failure. Small PDAs often close on their own, but some babies need medicine or heart surgery.
- Septal defects, like atrial septal defect (also called ASD) and ventricular septal defect (also called VSD). These defects leave a hole in the septum. The septum is the wall inside the heart that separates the right and left atria and right and left ventricles. The atria are parts of the heart that receive blood coming from other parts of the body. Ventricles parts of the heart that pump blood out to other parts of the body. A hole in the septum can cause blood to go in the wrong direction or to the wrong place. About half of all ASDs close on their own. Heart surgery and procedures with catheters (thin, flexible tubes) can fix medium and large ASDs. Heart surgery may be needed to fix VSDs.
Heart defects form very early in pregnancy. Some activities may increase the likelihood of your baby having congenital heart defects, such as:
- Smoking before or during pregnancy
- Drinking alcohol during pregnancy
- Taking certain medicines. You may need to stop taking a medicine or switch to another medicine during pregnancy. Don’t stop taking any prescription medicine without your provider’s OK.
Newborn screening checks for serious but rare conditions at birth. All states require newborn screening, but they don’t all require screening for CCHD.
Babies are screened for CCHD with a test called pulse oximetry (also called pulse ox). This test checks the amount of oxygen in your baby’s blood using a sensor attached to his finger or foot.
Signs and symptoms that your baby may have a heart defect:
- Fast breathing
- Gray or blue skin coloring
- Fatigue (feeling tired all of the time)
- Slow weight gain
- Swollen belly, legs or puffiness around the eyes
- Trouble breathing while feeding
- Sweating, especially while feeding
- Abnormal heart murmur (extra or abnormal sounds heard during a heartbeat)
If your baby shows any of these signs or symptoms, call her health care provider right away.
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Ruth saysJune 23, 2015 at 7:11 am
They’re so adorable! I wanna pinch them both! My heart’s crying when I see people/kids who have this heart condition because I witnessed my cousin that she undergone surgery to extent her life at the age of 1. I can’t bear seeing her who barely breathing when something causes her heart attack. I wish all kids will live normally as those kids who don’t have defects. Recently, I have read this post 8 Tips to a Longer and Healthier Life your readers may find it useful.