CDH babies who survive this terrible defect have a lot to over come due to their intense, life-saving Neonatal Intensive Care Unit (NICU) journey.

Babies with CDH must conquer:

1. Stability. This may require a conventional ventilator, oscillating ventilator, or ECMO (a heart/lung bypass machine). These babies are put under heavy drugs to help keep them sedated and paralyzed until they reach the point of surgery to fix the hole in their diaphragm.

2. Surgery. This may take a day or two or thirty. Surgery depends solely on how stable your baby is.

3. Drug Withdrawls. Your baby was on a lot of drugs from day one. This could include fentanyl (for pain- a sedative), pavulon (a paralytic), morphine (for pain), and pentabarb.

4. Oral Aversions. From day one they start on lipids and hyperal (nutrition). In my case- my kid didn’t eat from a bottle for the first month of life.  Some babies are put on feeding tubes after surgery to help with stomach issues.  Babies may not want something going in their mouth after having tubes stuck in them for a long time.

5. Feeding Issues/Reflux. This can begin with the oral aversion but it doesn’t end there. A lot of CDH babies will take a nipple and the food but will also throw it up. This includes massive reflux issues (GERD).   Some CDH babies will require a feeding tube, Nasogastric (NG) tube (nose insertion) or a Gastrostomy (G) tube (surgery to place into stomach). Most of these babies are on Zantac or Prevacid. Some of them are on Reglan as well. All of these medicines help with reflux- sometimes. Also some CDH babies are on higher calorie formula simply because they don’t eat enough as their bellies won’t let them, so they can gain weight.

6.  Reherniation.  Some babies who have a larger hole in the diaphragm will require a gortex patch to act as the diaphragm.  This may or may not cause a reherniation later in life, 4, 6, 10 months… at any time really.  Some babies won’t reherniate, others may three times.  I’m not sure what causes them to reherniate.  However if they do, they need surgery, yet again, but the docs say that this time, they are not sick any more.  (at least this is what my surgeon says) So recovery time will be quicker.

7.  Winter!  CDH babies need to go into hibernation during the winter season.  Why? Well our babies can’t get sick.  Easy said right?  If your CDH baby catches a cold earlier on, they could end up back in the hospital.  Their lungs aren’t yet developed like a normal babies.  This will take time.  My doctor, 2 weeks before we were discharged said – She can’t get a cold, if she does she could end up back here, or it could be fatal.  NO PRESSURE RIGHT?!  So during the winter season, flu, HINI, and RSV season, CDH babies need to be locked inside with mainly no visitors.  If someone you know is sick, tell them to back off.  It may be a good idea to post on your front door “If you have these symptoms- go home! Diarreah, upset stomach, cold like symptoms, fever, etc.”  You get my point!  So CDH Babies have a LONG winter!

8.  Lung Development.  CDH babies do not have the lungs that normal babies do.  Their lungs did not develop in utero like they should have due to all the abdominal contents that crowed the chest cavity.  Our doctors say it will be at least a year before Kayla can out into large crowds- and her lungs may never fully develop like those of a normal baby.  So please be careful- they may sound great- but they still need a little more time.