I'm pregnant

[cfmomma]

I am pregnant! I am freaked out and am on an emotional roller-coaster. We have really wanted to have another child, I always imagined having several. When our son was diagnosed with CF we stopped trying until we were both 100% in agreement with our decision. Five years later we still are unsure. I want another child so much it hurts, but I know the statistics and it scares me. I have been real tired and nauseated and so I took a pregnancy test. It was positive. I am so excited, but nervous. This is very much a surprise and I am still in shock.

I really want to know if the baby has CF but I want to avoid getting an amnio unless it is necessary. I will not get one just to find out if the baby has CF. I want to talk to my OB about getting routine ultrasounds later in the pregnancy to rule out meconium ileus and to better prepare. My son is doubledeltaf508, and has some digestive issues. I am assuming this is the only serious immediate problem a newborn CF baby has. How soon after birth can they test for CF, I want to skip the middle man and go straight for the blood test instead of a sweat test. My son was diagnosed at 18 months and so I have no experience with the treatments of a CF newborn.

I am already preparing myself emotionally for the possibility of this baby having CF. I pray that he/she doesn't. I feel excited, guilty, mad, peaceful and all the other neurotic emotions a pregnant lady feels. I am so much more nervous with this pregnancy, than with my son. I know that bad things can happen, I know the pain of seeing ones child suffer, and I know that illness dosen't just happen to someone else's kids. My son is the 1 in 3,000. I know it sounds cynical but I'm pissed off with CF and what it does to families. I hope I'm not this emotional my entire pregnancy. Thanks, I'm going to go to a 24 hour McDonalds and eat a greasy double cheeseburger with mustard and ketchup only.

 

[welshgirl]

sheli , many, many congratulations on your fantastic news<img src="i/expressions/beer.gif" border="0"><img src="i/expressions/present.gif" border="0"><img src="i/expressions/musicnote.gif" border="0"><img src="i/expressions/wine.gif" border="0"> i wish you all the best and hope everything works out well for you and your family. <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[coltsfan715]

Congratulations! Enjoy your Double Cheeseburger and do try to relax.
CONGRATS again!

Lindsey

 

[serendipity730]

Sheli,
First off, congratulations. I know this isn't how you would have planned it, but it is exciting nonetheless. To answer a few of your questions, CF can be diagnosed right after birth. They can use the cord bllood to do DNA testing. They can also do sweat testing on small babies, except sometimes they might want to repeat it just to be sure.
The only acute problem that a baby with CF might have is meconeum ileus - a bowel blockage at birth. If your baby had this problem a high resolution ultrasound would show a bright spot in the baby's abdomen. Unfortunately, this is the only way to detect (and it isn't 100%) CF without doing an invasive test like amniocentesis. I hope this helped!

 

[JazzysMom]

Congrats & Calm those nerves! Do you know if the state that you leave in has included CF in the Newborn screenings yet?

 

[letefk]

<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>cfmomma</b></i> I know it sounds
cynical but I'm pissed off with CF and what it does to families. I
hope I'm not this emotional my entire pregnancy. Thanks, I'm going
to go to a 24 hour McDonalds and eat a greasy double cheeseburger
with mustard and ketchup only.</end quote></div><br>
<br>
<br>
Heck, I am pissed off at CF, and I am not even pregnant! I can
totally empathize with your emotions.  We did not find out
that our girls had CF until the second one was born, and I have
always been grateful for that, because I think it would have been
hard to make the decision to have another child.  But the
truth is, each one of these kids is so worth every minute of
anxiety and heartbreak.  Not even CF can measure up against
the joy they bring into our lives, so I say congratulations, too.
 Sometimes, we can plan all we want, but what happens is just
what is meant to be!  <img src="i/expressions/face-icon-small-happy.gif" border="0">  

 

[JohnnaMarie]

Congrats on your news!! I do hope that the baby does not have CF too. Pray for the best. I will. All you can do now is enjoy the experience and take things as they come.

Much Love
Support and
Positive Thoughts
I am sending
Your Way!!

 

[Ratatosk]

DS was born with meconium illeus -- we didn't know anything about CF at the time. He was tested the night he was born and we had the results 5 days later. Also double delta f508.

I too have had similar feelings. Really, really want to have another child. Have looked into PGD and have decided it's not for us. We're both in our 40s. Pretty much resolved ourselves to DS being an only child unless we try to adopt. I sometimes wish that I'd accidentally conceive and then I would see it as a sign that we were supposed to have another child. I'm just not willing to take the chance. Good luck! Easier said than done, but just try to enjoy your pregnancy and preparing for another child. L

 

[Nicole]

Our son was diagnosed by testing his cord blood. He was showing an echogenic bowel before birth so they wanted to know ASAP. We had the results a day and a half later. Congratulations!!!!!

 

[EnergyGal]

Congratulations !!!!!

 

[julie]

Sheli, CONGRATULATIONS!!!!!

As far as the testing questions you asked... I think it's very wise of you to request that you be seen every 2-3 weeks as the pregnancy progresses to watch for echogenic bowel. That is one of the most important things you can look for. If the baby doesn't have an echogenic bowel, it doesn't rule out CF of course, but if the baby does then you can be monitored closley because it CAN (and does) rupture.

Since your son is a DDF508, the baby can have immediate testing done with the basic genetic panel that most pediatricians can order (the easiest might be for you to get a referral to your son's CF doctor and have him order it if you run into problems with the pediatrician). If your state does newborn screening for CF, it's possible that your new baby will carry at least one mutation and will flag on that newborn screening test. Which will then enable you to get the genetic test. But since you already have a relationship with a CF clinic, it might be easier to go that route if you meet even the slightest of resistance (who needs to deal with resistance????)

Best of Luck Sheli and a huge contrats to you!!!!!!!!

 

[mommy2bcw2]

Hi Sheli~

Congrats! I know where you are coming from. I am due THIS FRIDAY with our 3rd little girl. Our first we had no idea they had no screening and she is not a carrier and no cf! Our 2nd we were screened and we were surprised that we both came back carriers and of course she has cf. I was 6 months pregnant when we found out. It did make my pregnancy miserable that is all i thought about. We were not planning on having anymore little ones at all!!! Brinly has a mild cf case so far at 2yrs old but just as you know cf is scary!! We got the surprise pregnancy and i was so worried what would we do with 2 cfers?? I know peolple have this situation and they are handling it! I was soooo torn-excited but not excited at the same time! Anyway, we chose to have a CVS test at 11 weeks. It is the soonest we could tell if the baby would have cf. It used to be a test with a bad name but it has been updated and is very effective and safe. The results took about 2 weeks. They go through the cervix and pinch tissue from placenta so it is non invassive as well. (like a pap smear) Of course mine was a bit more complicated- my placenta was in front of my cervix so i had to have a amnio needle take tissue from my placenta thru my tummy. It showed all the worries of pregnancies like downs, spina bifida etc. so i didn't have to take those tests later in mymy pregnancy- it was all out on the table even the sex at 11 weeks!! We were blessed that this baby will be like our first no carrier and no cf!!!!!!!!! I hope this will be your case too!! Those genes are mysterical!! If you would like to know SOON i would ask your doctor about the CVS test! I know you are in Dallas and it is a 2 doctor procedure- I would give you their names if you would like? They are located at the Dallas Presybterian Hospital- my doctor from Plano sent me there because they were the best in Dallas!!! Email me if you like- blythe.weston@comcast.net If i don't reply it is because i went into labor.............

GOOD LUCK EAT LOTS AND LOTS OF CHEESEBURGERS!!! I LOVED BIG MACS!!!!
Blythe
Mom to Birgess 4 no cf, Brinly 2 w/cf and baby DUE ANYDAY no cf

 

[thefrogprincess]

Congrats!! How exciting, but I totally understand your nervousness! I have always wanted children so badly and have been very nervous about the possibility of my fiance being a carrier since I found someone on this board with the same last name as him. They are not directly related as far as we can figure but they probably have a common ancestor somewhere down the family line.

 

[sdstate]

Congrats!  I have 3 children.  Our oldest one has CF and
the other 2 are carriers. When our daughter was born she was
diagnosed at birth (through the newborn screening) so when I was
pregnant the other times, the Dr.'s had blood work sent off
immediately and we knew within a couple days if the boys had it or
not. 

 

[julie]

Blythe, congrats on your pregnancy. I haven't seen you post in a while and had no idea. Do you have a name picked out?

Sheli, How you doing with those pregnancy jitters????

 

[eli]

Hi Sheli, first of all congrats on your pregnancy.

Second, i know how you musy feel but all i can say is just try not too stress too much about it and take every day as it comes. Its happened now, and its happened for a reason (a good reason).

Hubby and i are planning tohave our second child, but don't know which path to take. We were thinking pgd, but when we looked into it and saw the implications it might have emotionally to our children we hought we might just try natural and just except what god gives us.

I guess you and your family, will just have to try and do the same.

I wish you all the best and i pray for you, that this angel you are carrying does not have CF.

 

[cfmomma]

Thanks everybody for all the support! I can't believe I am freaking out so much with this pregnancy. I am still so early in my pregnancy that it is ridiculous for me to be so worried (I am about 8 weeks). My mom does ultrasounds of the heart and so she really wanted me to come into her work to see if we could find the heartbeat. We saw nothing and I cried the whole way home. I called my sister-in-law, who is 19 weeks pregnant. She said you can't see the heartbeat that early especially with an external ultrasound--that made me feel a lot better.

I live in Dallas Texas, and testing is only done by choice. I really don't want to have any prenatal testing but I will definitly request the blood test as soon as he/she is born. My OB is awesome (he is at Baylor and is very experienced with high-risk pregnancies) and will agree to routine ultasounds later to rule out meconium ileus.

I am dealing with my jitters the only way I know how, spending way too much time on the internet looking at pregnancy sites and eating weird food. Blythe, I didn't know you were pregnant. That's awesome, happy delivery!!!

Thanks again everybody, it will an interesting nine months.

 

[julie]

Sheli, just to back your sister up, they had to do internal ultrasounds on me until about 13 weeks. You couldn't see a darn thing any other way. Is your OB going to bring you in and do an internal one? You've already got enought on your mind, I don't think it would hurt to try to get in and find a heartbeat!

Saying some prayers for you!!!!!

 

[cfmomma]

I'm supposed to see him August 7th, almost two weeks. My sister in law said if I was really, really worried I should go ahead and go in to get checked out. I think I can wait, but two weeks is a long time for an emotional pregnant lady!!

I was so scared to get pregnant and find that the baby also has CF, but now I'm so scared of losing this baby. I've already fallen in love with this baby and the idea of having another child. I don't think I could bear losing it and know that I might not ever have another one. Stupid pregnancy emotions!!! I cried yesterday during a movie starring Ice Cube, I am pathetic.

 

[Hughett]

Congrats, I am excited for you.  My wife and I just had our
baby (the cute one below), and he was genetically tested at 2
weeks.  He had meconium illeus when he was born.  As
stated above I guess you can test before he is born or after. <img src="i/expressions/face-icon-small-smile.gif" border="0">
 I am excited for you.  Hope all is well.