If you have just found out that your child or unborn baby has congenital diaphragmatic hernia (CDH), the most important thing you can do is ask questions and learn about this birth defect. Your doctors are the best source, but if you do not feel comfortable with them, there are many other doctors, medical centers, and hospitals that can and will treat a child with CDH. What is most important is that you are not alone. You have valuable resources among the parents who have walked a similar path. Breath of Hope is a group of parents, family members, and friends who are all trying to learn more about CDH and be there when a cure is discovered. It is also important to know that each of these children with CDH is different. Cases might be similar, but each is as unique as a snowflake.
The best thing you can do for your unborn child is to give birth at a hospital with a Level 3 neonatal intensive care unit (NICU) with an ECMO (extracorporeal membrane oxygenation) machine. Approximately 60 percent of all CDH babies will be on ECMO after they are born, some even before, during, or after surgery. Transfer your care to a perinatologist or a high-risk obstetrics doctor who has had experience delivering babies with CDH (unless you have a great current OB that you trust and know will do his or her ultimate best for you and your child). Be sure to set up an appointment or several appointments to interview the surgeon, the neonatologist, and anyone else you feel you should talk with before your child is born. You can interview the doctors. We know that right now you feel you have absolutely no control and it is unnerving, but this is where you have control.
You are the parent and you know in your heart what is best for your child. Most of the time in the US, parents have four options for treatment:
1. Give birth at a Level 3 or 4 NICU with ECMO available. This is the “traditional” treatment for CDH.
2. Endoscopic tracheal occlusion fetal surgery prior to birth, if appropriate. Highly trained surgeons must perform this surgery, and it comes with risk to the mother. This option is available in only a very few medical centers in the US, and is only done on the most severe CDH cases.
3. Induce the pregnancy early or terminate the pregnancy, especially if there are other medical issues with the unborn child.
4. Choose a “compassionate birth”—wait until the baby is born and make an assessment then. Many doctors don’t mention this option.
None of these choices is easy. The unborn child’s condition, the mother’s health, and other factors can influence the best choice in each case.
Breath of Hope respects and supports decisions that a parent makes for the care of his/her child. We do not give medical advice; we encourage you to seek information from your doctors and your child’s doctor. We have parents who are constantly researching and have the experience of having had a child with CDH. We can tell you what information to dismiss that exists out there on the Internet; if it is more than three years old, it probably no longer applies.
For further information we have links and downloadable booklets located on our site at this LINK and you can also contact us at email@example.com to request our package for Expectant/New Parents we call the Comfort Care Package which includes printed materials and some items to give you hope and comfort for your journey.
The closest to being in control we will ever be is in the moment we realize we’re not. – Brian Kessler