Some Things to be Aware of.

            There are some things that go along with CDH babies I feel that I should give everyone a heads up about.  In the words of my mother, “Forewarned is forearmed.”   ***Some of you may not want to read this list.  You may find it slightly upsetting.  However, I would rather post it now, instead of having everyone fall apart once the baby comes.

·         The baby will not be able to cry.  He will be intubated directly following birth.  So there will be machines breathing for him, tubes everywhere; not gonna sugar coat it.  With all these tubes in place, it will keep him from being able to cry.  This does not mean he will not TRY to cry, he just will not be able to make any sound.

·         The 2 things that work will be working against my baby the most are going to be Pulmonary Hypertension and Pulmonary Hypoplasia.  The Pulmonary Hypertension is extreme high blood pressure.  With the baby’s lungs being underdeveloped, the heart pumps faster than the lungs can process.  Pulmonary Hypoplasia is basically the underdevelopment of the lungs in general.  A lot of babies do not make it due to these 2 factors. 

·         ECMO – (extracorporeal membrane oxygenation) is a machine that provides cardiac and respitory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function.  Many CDH babies have to be put on these machines.  They are scary, yet they keep them alive by doing the work of the baby’s heart and lungs to give the actual organs themselves time to grow and develop while the machine keeps the baby alive.

·         We cannot hold him.  With his condition being as severe as it is, he is whisked away and stabilized.  His condition will be too fragile for us to be holding him like a normal newborn.  Not so looking forward to this.

·         He will be sedated.  To what degree depends on him and how he handles everything.

·         He will have to undergo surgery or surgeries.  If he has to go on ECMO it requires surgery.  He will also have to have his repair surgery done when he is stable enough to go in for it.  Could be 3 days after delivery or 30.  No way to tell at this time.

·         Re-herniate – A lot of CDH babies do re-herniate at some point.  This is something you have to keep a watch for long term with CDH survivors.