Words of hope? Please

[lexi0408]

First let me say I know I am incredibly lucky. I am the proud mother of two healthy boys (3yrs and 17 months). My husband and I are, obviously at least carriers or I wouldn't even be seeking advice here. I found out I was a carrier for CF when I was 10 weeks pregnant with my first son in 2010 I tested positive for delta F508. My husband was subsequently tested and he's also a carrier for a different (and much less common) mutation though I don't remember which. We didn't do any prenatal (amnio,cvs) with our first baby. My pregnancy was difficult and scary as at 29 weeks I had a partial placental abruption and was on bed rest for 3 weeks at 32 weeks I went in to my OB's office and in 45 minutes my blood pressure went from 125/85 to 210/110 less than 20 hours later I was 90 minutes from home and delivering my baby. At 2 weeks he had his newborn heel prick- another week later we learned the best news that the screening was negative for CF our baby isn't even a carrier. Fast forward 19 months almost and my husband and I were pregnant with our second child. This time we opted for an Amnio- the results took a very long two weeks but again we received the news that our baby was indeed a boy and that he was also not a carrier for cf. Now my baby is almost 18 months old and I am feeling the itch for another baby. It's thought consuming. I just don't feel complete I want another child in my family. My insurance doesn't cover IVF/PGD at all and I can't afford it out of pocket. My husband is petrified and I know and understand why. We both know we've poked a sleeping dragon twice now and have been spared. I also know that the chances of having a CF positive child don't change with each pregnancy that it remains 25% and 75% but is there anyone out there that can give me words of hope? I know I won't be complete without another baby but my husband is adamant that he does not want a baby with CF. Please. I've tried googling stories of women that have had 3 non-affected babies naturally with 2 carrier parents but it seems like there's none to be found. I guess I'm looking for hope or words of encouragement that it does and can happen....and it could be me.

Thanks in advance

 

[Nikole]

Hello. I understand the mixed emotions about having another child. Our first born had a massive bowel obstruction and was tested for cf and both times the newborn screening were negative. Nearly three years later we found out that she did indeed have CF. By then, we already had our second daughter, who does not have cf. I always wanted a big family and the stress of having a third was scary. I wanted another so badly but had the same worry. Again, we had a third and with all the worry, she is just a carrier. We decided to be done with three but then our boy (4th born) was a surprise. I worried the entire pregnancy bc I just had a feeling he would have it. We never did amino with any of mine because I figured it is what it is and there is no changing the outcome. Our fourth did have cf. He will be two next month. They are both doing great, and although we are busy with treatment s and all preventive measures, it was worth every worry. Although I wish they didn't have to have cf, I wouldn't change anything about having my big family. There are soooo many treatments out now and with all the new drugs, especially the ones targeting dF508, CF is and will continue to be a very manageable, if not curable, disease. We live a normal happy life and even though ere are hiccups, we get through it! Good luck.

 

[bbarry]

Consider adoption

I just want to put in a vote for adoption or fostering. We have several friends who have adopted children. We ourselves have three kids, two with CF. We went into our last pregnancy completly open to the possibility that the child would have CF and he does. And he's an amazing gift to this world, in spite of and because of the challenges of CF. We have absolutely no regrets. We remain open to fostering. There are so many kids in need.

God bless!

 

[RockyLass]

I agree with bbarry. I just wish the fostering/adoption process wasn't so expensive or complicated. Bbarry, that is awesome about your baby with CF, you showed strength when you knew there would be a possibility of hardships and it doesn't distort the way you see YOUR son !

 

[imported_Momto2]

Let me put in another plug for adoption. We have two daughters; our oldest was adopted internationally (took 14 months) and she came home at 11 months, and our youngest daughter was adopted domestically as a newborn (took 3 weeks for match after we finished the paperwork). Our international adoption was definitely more difficult, domestic was a breeze. Both are amazing kids.