CDH Awareness

4/2/2016

April has been designated as the National Congenital Diaphragmatic Hernia (CDH) Awareness Month and April 19th is the International Day of CDH Awareness. In May of 2014, CDH forever changed our lives. We educated ourselves on CDH, prepared for the worst possible outcome, and hoped with all we had that our little boy would survive this debilitating birth defect.

We are now almost twenty-two months into Caleb's CDH journey and it has been quite the adventure. Caleb spent 332 days in the hospital and the past ten months with him at home have been incredible. We love watching Caleb grow into a toddler and we are enjoying our family time...seeing the way Brody interacts with his baby brother has been priceless. Caleb is stable at the moment, but he remains medically fragile so we live one day at a time. His strength and resilience continue to amaze us!

CDH is all around us and this birth defect is more prevalent than most people realize. Although there has been great strides made in research, there remain high rates of morbidity and mortality in cases of server CDH. It is imperative that we become more knowledgeable about how to treat this complex birth defect, study unborn babies with severe CDH to determine if certain indicators are related to how well a child responds to clinical care after birth, track the long-term outcomes of children with underdeveloped lungs, and search for other conditions that are often accompanied with pulmonary hypoplaosia. Neonates born with CDH often require intensive treatment after birth and have prolonged hospitalizations, and may suffer a variety of complications after discharge. Follow-up care is critical for long-term well being.

Whether you are a parent, family member or friend of a CDH survivor, expecting a baby with CDH, or know someone who has gotten the devastating news…we can all make a difference…together!

Here are some facts about CDH:

The wide, flat muscle that separates the chest and abdominal cavities is called the diaphragm. The diaphragm forms when a fetus is at 8 weeks’ gestation. When it does not form completely, a defect, called a congenital diaphragmatic hernia (CDH), is created. This is a hole in the muscle between the chest and the abdomen.
The majority of CDHs occur on the left side. The hole allows the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected resulting in pulmonary hypoplasia.
Infants with CDH also commonly have a very serious and potentially life-threatening problem called pulmonary hypertension. Pulmonary hypertension is a type of high blood pressure that affects the arteries in your lungs and the right side of your heart.
There is a 33 percent chance that a baby with CDH will have another birth defect. Heart defects are the most commonly associated abnormality, and trisomy 21 (Down syndrome) occurs in five to sixteen percent of infants with CDH.
The cause of CDH is not known.
CDH occurs in 1 in every 2500 babies.
1600 babies are born in the U.S. every year.
Every 10 minutes a baby is born with CDH.
Worldwide, more than 700,000 babies have been born with CDH since 2000.
50% of babies born with CDH do not survive.
CDH is as common as Cystic Fibrosis and Spina Bifida.

The first thing we learned about CDH, is that every experience is unique. No two babies are the same, and no case of CDH presents in exactly the same way with exactly the same outcomes. We started this blog as a way to share our story with family, friends, other CDH families, and to help raise awareness and hope for babies born with CDH. Our little boy, with the contagious smile and happy personality, is surviving both prematurity and CDH.

We post these pictures of Caleb's scars in hopes that one day he associates them with his strength and bravery. May he not be ashamed, but always remember that he is a miracle in every sense of the word. He is our SUPERHERO!!!