CLE and Future Pregnancies

I'm moving into my second trimester of pregnancy with baby #3, and baby #2, Andrew, is our little CLE baby.  Like many families, we've never had a birth defect in our family, so this is unchartered territory for us.

I had a checkup yesterday and talked to my OB/Gyn yesterday about how we need to handle the pregnancy.  Here are the factors that affect future pregnancies: 

• Congenital Lobar Emphysema typically happens spontaneously.  However, there are some cases that are inherited genetically, with even fathers and sons having it as well as mothers and daughters. 
• When CLE is genetic, it is through autosomal dominant inheritance, which means that if you're a carrier, your children have a 50/50 chance of inheriting it. 
• CLE is more common in males, so that can skew the above numbers a bit.
• CLE can be detected and monitored throughout pregnancy by using ultrasounds, but it is not always detectable in the womb.
• There are very clear benefits to knowing your child has CLE ahead of time.  I would want to deliver at a hospital where the doctors are somewhat familiar with CLE and near a children's hospital, so that my child can be transported there quickly if he or she needs an emergency lobectomy.  I live 2 hours away from one children's hospital and 3 hours away from the one where Andrew had his lobectomy.  The hospitals in my smallish town are nice, but they're in no way equipped to deal with such a serious situation, which is why Andrew and I were flown to Dallas, TX for his lobectomy.

My OB/Gyn for this pregnancy is the same one who delivered Andrew and he's also a family friend, so he's a little familiar with the situation because of that.  But like most folks, he's really not incredibly familiar with CLE.  He's going to research and do his homework on CLE and come up with a plan, but at this point, he believes the best thing to do is to refer us to a genetic counselor. 

I'm completely unfamiliar with genetic counseling, but from what my doctor explained, the counselor will talk with us about the genetic side of CLE.  If needed, we'll get testing to find out if my husband and I are carriers of CLE.  If one of us is a carrier, then we'll have to figure things out from there.  The plan will likely include a Level 2 Ultrasound to check for the birth defect. 

Have any of you met with a genetic counselor regarding CLE or any other birth defect?  I'm really curious about the process.  How did your doctors handle future pregnancies after having a baby with a birth defect?  I do think this is one of many situations in which it's nice to have an OB/Gyn who you can trust to make the best decisions for your family.