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 and Medical Centers and hospitals that can and will treat a child with CDH.  Most importantly, you are not alone.  You have real resources with the parents who have walked a similar path as you are now on.  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 or 4 NICU Neonatal Intensive Care Unit with ECMO.  (Please go to the ECMO Tab for further information.)  Approximately 60% 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 they will do their 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.  This is where you have control.  You can interview the doctors.  We know that right now you feel you have absolutely no control and it is unnerving.

You are the parent and you know in your heart what is best for your child.  Most of the time as a parent we are given four options in the United States for treatment:

1. Give birth at a Level 3 or 4 NICU with ECMO available.  This is considered the “traditional” treatment of CDH.
2. Some may be given the option of Tracheal occlusion or Fetal Surgery prior to birth. Highly trained surgeons are needed to perform this surgery and it comes with risk to the mother.  Very few are given this option and very few Medical Centers in the United States offer this option.
3. Induce the pregnancy early or terminate the pregnancy, especially if there are more medical issues with the unborn child.
4. There is another option that many doctors will not tell you about - a Compassionate Birth or to wait until the baby is born and assess them.
5. None of these choices are easy.  Based upon the unborn child’s condition, the mother’s health and other factors can influence what is the best choice in each case.

Breath of Hope respects and supports decisions that a parent makes for the care of their child.  We do not give medical advice; we encourage you to seek information from your doctors and your child’s doctor.  We do have parents who are constantly researching and have experience of having had a child with CDH. 

We can tell you what to dismiss out there on the Internet.  If it is over 3 years old, it probably does not apply to the here and now of today.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope?  We have two options, medically and emotionally:  give up, or Fight Like Hell. - Lance Armstrong