My thoughts and prayers are with you, your baby girl, your family and the doctors & nurses caring for your child. Having a critically ill infant is always very difficult and scary.
As you probably know by now, your daughter is not able to break down the sulphite that naturally occurs in the body. This build up of sulphite is causing neurological damage and seizures.
The goal of using phenobarbital is to help make your daughter more comfortable by preventing or reducing seizures. CPMP (cyclic pyranopterin monophosphate) helps her body break down the sulphite. CPMP is an experimental drug and (to my knowledge) the only treatment that has ever been shown to be effective against Molybdenum cofactor deficiency disorder. The fact that her doctors have her on CPMP is a good indication that they are doing everything medically possible for your child.
I have found a few things that are important to remind parents who are enduring the very real possibility of losing a child:
- Most parents in your situation subconsciously find a way to blame themselves. As a medical doctor, I want to reassure you that this is not your fault. When you start blaming yourself, it is important to remember this.
- Make sure you communicate with your partner. Different people handle stress and grief differently. There are those who cry and grieve through the entire ordeal, there are others who focus all of their energy on specific tasks or goals and there are others who continue on like nothing is happening (only to grieve later). It is important to remember that there is no right or wrong way to process this experience.
- Although every couple is different, with a critically ill newborn, it is common for the mother to be much more attached and to appear to take things harder than the father. Remember, the mother was intimately connected to the baby throughout the pregnancy whereas the connection was much more abstract for the father. It is very easy to misunderstand how your partner is responding which intern can lead to increased stress in the relationship. By communicating (both expressing how you feel and asking the other how they are feeling), you can better appreciate your partner.