Hi Melissa,

I haven’t written before because I didn’t have the energy ;-).  I have SW-CAH (21-hydroxylase) and my husband is unaffected.  We have four healthy children.  I took dexamethasone and Florinef through all pregnancies and nursed all for a minimum of 9-10 months.  I was put on Synthroid after the first pregnancy.  All were delivered by c-section.  All are carriers.

My normal dosages of meds are:

0.25mg of dexamethasone

0.15mg of Florinef

The Synthroid has stabilized at 0.112mg daily.

During pregnancies, my dexamethasone increases up to a max of 1.0mg at the very end and thru delivery.  After, we slowly go back to non-pregnant doses.  My Florinef  has gone up to 0.2mg.  Sometimes, we get it back to 0.1mg.  The Synthroid changes also but I can’t remember how much exactly.

Lots of heartburn.  I kept Tums everywhere – in the car, the kitchen, next to my bed.

Here goes:

Pregnancy #1 (Planned)

I was 28 when we started trying.  I was lucky - it only took about 6 weeks.  I had morning sickness constantly.  I could not be in the same room as chicken or candy.  I gained about 30 pounds (which I did not lose until two years after the second baby).  Everything went fairly smoothly until about the 30th week.  Started feeling nauseous constantly.  Red face.  I ended up with an emergence c-section due to preeclampsia at 34-1/2 weeks.  He weighed 4 pounds, 8 ounces.  Everyone recovered.  I nursed him for about 10 months. My son is now 11. 

Pregnancy #2 (Planned)

I was 30 when I delivered this one.  Full term, no complications.  1 and 2 are 19 months apart.  I gained 30 pounds (I lost all the weight through diet and exercise about 2 years later).  My daughter was delivered via c-section at full term.  She weighed 7 pounds, one ounce.  We went with a c-section just because I had one the first time.  I wouldn’t do that again if I could help it.  The second c-section took a lot more time to heal.  They send you home and tell you that you cannot lift anything other than the newborn.  Try explaining that to your toddler!  She is now 9.

Pregnancy #3 (Oops!)

I was 35 when I got pregnant with my second daughter.  I was sick the entire pregnancy.  Everyone kept saying, “You’re pregnant!  You’re not supposed to feel good!”  The difference is that I had MUSCLE weakness (a sure sign of undersuppression).  My endo thought I was on enough dexamethasone but I did not agree.  The entire pregnancy was spent “chasing” my ACTH levels.  Erin was born by c-section three weeks early because of “failure to thrive”.  We attempted a VBAC but the induction for labor was not working.  They tried induction for 3 days with no response.  It was getting close to Christmas so I opted for the c-section.  I wanted to be home with the other two.  She weighed 5 pounds, 5 ounces.  I only gained 5 pounds through the entire pregnancy.  My OB/GYN hinted that I was too old to be having any more babies.  I knew it was due to my inadequate CAH care.  She is now 3.

Pregnancy #4 (Oops Again – You would think I’d learn!!)

 

I was 37 when I conceived Jack.  He was born full term last May (just before I turned 38).  He weighed 7 pounds, 10 ounces.  I was very aggressive with the endo, insisting on blood draws once a month to keep track of my levels.  I gained 20 pounds and I’m still working on it J.  I had him by c-section because no one wanted to try a VBAC after 3 previous c-sections.  Jack was my biggest baby yet and I had to throw that in the OB/GYN’s face.  Maybe I wasn’t too old.  Erin and Jack are 17 months apart.  He just turned 1 yesterday.

 

I had my tubes tied when Jack was born.  No more for me.  Not sure I could do it again with four waiting for me at home.

 

I hope this helped.  I’ve heard other CAHers say they have had trouble getting pregnant.  I think it may somewhat be like the general population.  Some have trouble, some don’t.  If you have normal (regular) periods, you may luck out.

 

Best wishes on your efforts to have a family!