30 for 30

Today is my 30th birthday! In honor of this milestone, I'd like to share 30 facts about CDH. Although CDH is as common as other well-known birth defects like Spina Bifida and Cystic Fibrosis, many people have never heard of it. Our daughter will face many challenges starting at birth. This post is meant to help the reader better understand these challenges and the complexities of CDH.

Please note: I'm not a doctor. All of the following statistics and statements have been gathered through my own research. 

1) The diaphragm is formed between week 7-10 of pregnancy. No one knows why the diaphragm does not form correctly in CDH babies.

2) The odds of having a CDH baby are about 1 in 2,500 live births.

3) Roughly 1,600 babies (out of 4 million) are born with CDH every year in the United States. About half of these babies will not survive.

4) Every day an estimated 4 families will receive a CDH diagnosis.

5) About 40% of CDH babies will also have another birth defect. This is called Complex CDH. The most common is a Congenital Heart Defect. Chromosomal abnormalities or genetic syndromes are also a concern.

6) About 60% of CDH babies will not have another identifiable birth defect. This is called Isolated CDH.

7) Parents who have had one child with an isolated CDH are at an increased risk (about 2%) to have another child with the same defect.

8) Amazingly, many CDH cases still aren't diagnosed until AFTER the baby is born. (Scary!)

9) The average hospital stay is 60 days.

10) Parents won't get to hold their babies right away since treatment begins immediately at birth. It could be weeks before this special moment occurs.

11) Most CDH babies will not be able to adequately breathe on their own and will need to be immediately intubated and ventilated. Additionally, most CDH babies will be unable to cry at birth.

12) Babies with severe breathing problems may need to be placed on ECMO (Extra Corporeal Membrane Oxygenation), a bypass machine for the heart and lungs. The baby's blood is oxygenated as it passes through the machine on its way back to the body, essentially taking the place of the heart and lungs so they can rest. ECMO can also result in serious complications such as bleeding and infection.

13) Many CDH babies have feeding and growth issues.

14) There is a high probability of CDH babies needing to come home on oxygen and with a feeding tube - either through the nose or surgically implanted in the stomach.

15) Many CDH babies have respiratory issues such as Asthma.

16) For reasons unknown to doctors, CDH babies are at risk for childhood hearing loss.

17) CDH babies have weakened immune systems and will need to be sheltered during cold and flu season. A simple cold could result in a hospital stay. Thankfully, this usually improves with age.

18) The lungs continue to develop until 9 years of age, so with proper treatment it's likely that CDH kids can continue to improve over time.

19) Many CDH babies re-herniate and will need one or more repair surgeries, especially in the early years.

20) Some CDH babies will be delayed in meeting developmental milestones such as sitting up, crawling, and walking.

21) CDH kids are lovingly referred to as "million dollar babies" because their treatment is so extensive and expensive.

22) Many CDH babies will have gastro-esophageol reflux disease (GERD) which can cause heartburn, vomiting, feeding problems, and lung issues. This can be treated with medication or surgery in the most severe cases.

23) CDH babies require more calories than their peers. This can be quite the challenge when coupled with their inherent feeding problems and is the main reason feeding tubes are sometimes necessary.

24) No two CDH babies are alike, even if their prognosis is similar. This makes it especially hard to anticipate how they will react to treatment.

25) The hernia can occur on the left side, right side, or in very rare cases, both sides.

26) 20% of CDH pregnancies are also diagnosed with polyhydramnios - an excess of amniotic fluid. This can lead to a variety of complications including premature birth.

27) CDH outcomes are greatly impacted by the position of the liver. The probability of survival is much greater if the liver stays down in the abdomen.

28) CDH babies require massive amounts of medication during their hospital stay. The necessity for pain management drugs such as morphine can result in severe withdrawal symptoms.

29) Some defects can be corrected by simply closing the hole in the diaphragm using surrounding tissue. Other more severe defects will need to be corrected using a GORE-TEX patch.

30) Though CDH babies have a rocky start, many survivors go on to lead relatively normal lives - with no evidence of their condition other than a few scars and battle wounds.