Congenital Diaphragmatic Hernia is a rare condition that occurs when there is a hole or deformation in the diaphragm of a developing fetus. The diaphragm is a muscle that separates the chest from the abdominal cavity. If the diaphragm doesn't form properly, it leaves a hole which allows bowel and other organs (ex. stomach, liver, spleen) to move up into the baby's chest, which compresses the developing lungs, crowds the heart, and prevents the lungs from growing normally. But with timely diagnosis and treatment at an experienced hospital, CDH -can- be managed effectively.

The CDH spectrum is vast, but one thing unanimously agreed upon is that the recovery is very complex and should be treated by surgeons/specialists with CDH experience. Recovery happens in stages and may require months spent in the hospital. After discharge, some warriors will show no signs of ever having had CDH (except for the scar on their bellies). Others may temporarily require therapies to meet milestones, and/or a feeding tube or trach; others may need support for much longer.

There are survivors in preschool, running track, playing football, getting scholarships -- there are even female survivors who have had children. Quality of life after discharge largely depends on care/treatment received at birth, which is why we feel it is so important to choose a hospital that specializes in CDH.

The cause of CDH is unknown, but is thought to be a combination of genetic + environmental factors. We are committed to supporting studies attempting to find the cause and/or identify CDH sooner than the 20-week anatomy scan (ex. genetic testing).

Your well-meaning OB/MFM probably advised you to terminate your pregnancy... You may be surprised to learn that we've heard the same thing from the majority of CDH families we've spoken to, but here's the thing: OB/MFM's don't have any experience with CDH beyond diagnosis. Unbeknownst to them, the information they reference to deliver the diagnosis is largely outdated.

This is why we urge you to take any harrowing details you've received from your OB/MFM with the biggest grain of salt, and pursue scans/testing from an experienced hospital -- let the surgeons and neonatologists themselves tell you about the reality of CDH and where your baby falls on the spectrum, because they see it every day.

1. Take a deep breath in... and exhale. You will be receiving a lot of information, then have to try and process it and make decisions while simultaneously grieving the healthy pregnancy/birth/baby you thought you'd have, and that can be incredibly overwhelming. Please know that this reaction is common, and you are not alone.

2. Research and choose an experienced hospital. We recommend sticking to our list. For the best care, you may need to consider temporarily relocating (We recommend from at least 1 month before birth through baby’s recovery). Financial support is available (and many sources are listed on our Resources page).

3. Schedule calls and/or testing. You do NOT need your OB/MFM to facilitate this communication, you can reach out via the hospital's website (via the "Learn More" links on our Hospitals list)

Testing generally occurs over the course of 2 days at the hospital (usually weekdays -- hospital services are limited on weekends). NOTE: Test results, ultrasounds, etc may be shared with another hospital for a 2nd opinion. If you choose the 2nd hospital, they will probably ask you to repeat many (if not all) of the same tests at their facility.

TIP: Bring Tiny Hero’s list of questions with you. At experienced hospitals, most of these answers will be revealed during the testing process (typically, surgeons will be your best sources of information). Don't be afraid to ask questions if you don't understand something, it is literally their job to help you understand.

The average survival rate for babies born with CDH is 70%, but hospitals with more experience have MUCH HIGHER survival rates. Many families opt to relocate for treatment at a hospital specializing in CDH (listed here) from about 1 month before birth until baby is discharged.

There are several organizations who offer financial support for relocation, listed here. We recommend to pick a hospital(s) from our list, schedule calls and/or appointments, chat with surgeons directly (ask them these questions), and choose the hospital that feels right for you.

Expect to spend a minimum of 2-3 months in the NICU. Every baby is different — some are out in 1 month, others in 6 months (or anywhere in-between), and some (though rarer) even longer. It depends on your baby’s individual journey, which is impossible to predict... so try to prepare for the long haul.

In rare cases, intervention with CDH may begin with a surgery performed on the fetus in-utero. But generally, prenatally-diagnosed CDH babies are induced around 38 weeks. At birth, they require immediate breathing support and are transported to their own room while Mama is transferred to her own room in the Maternity Unit. As soon as Mama is able to get in a wheelchair, she can visit baby.

Once baby is stabilized, generally within 1 week, surgery is performed to repair the diaphragm. If baby is too unstable during the first 24-48hrs, ECMO may be required. Repair surgery may be performed on ECMO if it looks like baby will not stabilize without it.

Then begins the multi-stage process of weaning off of medications, breathing support, and introducing feeds via nasal tube. Setbacks, infections and complications are common during CDH hospitalization, may prolong healing, and thereby extend time in the hospital.

Once baby is gaining weight and care is manageable for the family, the hospital journey ends. For some, this may look like bringing home a brand new seemingly-healthy newborn with a very sensitive immune system (particularly to respiratory infections). For others, they may also have oxygen support and/or feeding tube (generally temporary). We'll say it again: The CDH spectrum is vast.

Where will we stay? Your hospital will likely assign you a social worker who can provide options, but in general most of the hospitals on our list are near a Ronald McDonald House (which is like a hotel exclusively for hospital families, at little to no cost). Another option may be an Extended Stay hotel, or discounts offered by other local hotels. Furnished Finder or Airbnb are also great options if you're willing to commit to a timeline.

How can we afford it? We have a list of resources which offer short-term financial support. After you go for detailed testing at an experienced hospital, consider letting your job(s) know about your baby's condition. Ask if they can extend your paternity/maternity leave so you can stay by baby's side as long as possible. We've also heard of some families who have had success with Temporary Disability Insurance for additional support.

Finding support when facing a CDH diagnosis is so incredibly important for your mental health. There are so many ways your family can support you — even from a distance.

1. Share this website with them so they can better understand what you are going through.

2. Ask them to be patient with updates. CDH recovery can be slow, and there are not always daily updates… but family can/should check up on YOU frequently. (Some CDH families recommend scheduling a different family member to call each day — Mom on Mondays, Dad on Tuesdays, etc…) Plus, taking a phone call is a good excuse to step out and get some fresh air.

3. Ask for help taking care of your home, especially if you are temporarily relocating. (Mow the lawn, fill fridge/pantry, do dishes)… Hospital life is draining, and the last thing you will want at the end of the day is to come home and be overwhelmed by a sink full of dirty dishes or a neglected trash can.

4. Set up a mealtrain. This is a great way to make sure you're getting calories (especially for the pumping/recovering Mama), take a break from hospital food, and remove the stress/guesswork out of having to prepare dinner at the end of the day.

If you are a former NICU/CDH parent and have any other suggestions, we’d love to hear from you! Please use our Contact Form to get in touch.