Making difficult decisions

There will be many difficult decisions that you may face in your journey with CDH. The following are some that you may encounter.

If a diagnosis is made prior to birth, your doctor will probably (and should) offer you the option of terminating the pregnancy. Only you know what the best decision for your family is. There is no right or wrong choice. You will need to take into consideration many factors: your religious beliefs, personal feelings, the severity of the defect, your partner/family’s feelings and many more. Whatever your decision, no one should make you feel guilty; you WILL know what to do. You may choose to tell people the truth or that your pregnancy ended in miscarriage if you decide on termination. The decision is completely yours but it is ok to keep some things to yourself if you want to do so.

You may be faced with placing your child on ECMO, extracorporeal membrane oxygenation. I will be honest, it is not a pretty process or a nice looking machine and it offers no guarantee of survival. In consultation with your medical professionals, you will decide what is best for your child.

There are countless other medical procedures that you may have to consider. Some include chest tubes, PICC lines, central lines, experimental medications, etc. You ALWAYS have the option to say no. If the doctors disagree with you, the issue could be brought before the hospitals medical ethics committee. But that’s ok; it is your right as a parent to say, “Enough is enough.”

There may come a time when you have to make the most difficult decision anyone ever has to make—whether or not to discontinue medical support resulting in death. Nothing can make this choice easy. With the advisement of your medical team and family, you will make the right decision. You may believe that your child has suffered enough and it is time to let go. Or you may decide to continue treatment and/or try something different. Whatever your choice, you do what you feel is best. Some may criticize your decision but remember that it is easy to be critical when one has not faced this decision themselves.

If your child does die, you will probably be asked if you want to have an autopsy performed. Some cannot bear the thought of their child going through anything else, another invasive procedure. That is ok. Others crave more information or hope that the autopsy findings can help gather information about the defect. That is ok too. If you are unsure, you may ask if they can use existing surgical incisions rather than making new ones. Many medical examiners offices are willing to do this. As with any other decision, there is no wrong choice, it is your personal comfort level that matters.