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Mom of newly diagnosed CF toddler and pregnant with CF fetus

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Posted 4/29/2006 1:35 AM (GMT 0)
I am a mom of a 2 year old boy who was just diagnosed 2 days ago with CF and also pregnant with another boy who was diagnosed with CF.  We have been inundated with information, enzyme treatments, etc. regarding treatment for my son.  My husband and I are on the fence about whether to continue with the pregnancy or terminate. 

Any thoughts?  I don't quite know what I'm up against with having 2 boys back to back with CF.  We also have a 4-year old daughter who is not CF.

Would appreciate any honest feedback regarding the pregnancy.  My husband and I need to make a decision in the next couple of weeks....we're just so scared about all this recent news.

Posted 4/29/2006 3:07 AM (GMT 0)

Hi! I am sorry to hear that your son and your unborn child have both been diagnosed with cf. I have a two year old son that was diagnosed with cf at 2 weeks of age. I know it is alot to just have one child with cf and I cannot imagine having to do it for two. Now with that said let me now say that if I were in your shoes I would not end my pregnancy. I personally would do whatever I had to do to make each of these childrens lives the best they could be. They are getting closer to a cure all the time and so many new meds that can make life better for those with cf. Your unborn baby deserves a chance at life.....everyone does. This of course is my personal opinion. I wish you the best and will keep you and your family in my prayers....I know this is a very hard time.

 

Posted 4/29/2006 3:18 AM (GMT 0)
Hi Again! I just wanted to add that I know it is overwhelming at first when all of the info. is being thrown at you at once. But you will get into a routine of what to do and when to do it. Life does get a little easier once you get used to doing the treatments and giving the enzymes. When my son was first diagnosed I was completely overwhelmed. Plus it is a shocking diagnosis (it was for us) and it just takes awhile to comprehend. Anyway I am praying for you guys.

Posted 4/29/2006 1:10 PM (GMT 0)
Hi-
I am currently waiting to find out if my husband is a CF carrier (I am pregnant w/ baby #2 and just found out I am a carrier). My main concern is for the son I already have - I am terrified he will have it. He is really big for his age, but did have a bout of pneumonia once that cleared up nicely with antibiotics. There are so many symptoms that he could have, but for the most part he looks healthy as a horse, so I am hopeful.
As to the termination - I am having this child no matter what, and I will love him/her with every breath of my being. I love my son more than life itself and will try to make sure he has the best life ever regardless of any type of diagnosis. I also think that you son Max would benefit by having a brother in a similar situation. I know that if I had such a rare disease, it would help if I had a family member in the same boat I was in. It will probably make them very close throughout their entire LONG lives. No one knows what tomorrow brings.
Posted 4/29/2006 2:35 PM (GMT 0)
Speaking as a person who does have CF - I would definitly have the baby. My mother was told when I was diagnosed that I would most likely not live to see age 6. I'm 24 years old, and still very healthy. This goes to show that you really have no idea what tomorrow brings. Both your son, and unborn baby could very well lead for the most part normal lives. There are new treatments everyday, the median age of a person with CF is about 37 - this is up from 34 in 2004. Half of these people will live longer than 37. Yes, CF is a scary disease, and it will be overwhelming, BUT you will learn, you will get used to it, CF will become common knowledge and normal for you and your family. Who's to say that your children will need a lot of treatments? There are CFers out there who don't need enzymes, who donn't have digestive problems. There are CFers out there who don't have lung involvement, or minimal lung involvement. I've gone through almost 25 years of my life, with only 3 hospitals stays, and very few medications. So there is hope.
Posted 4/29/2006 8:28 PM (GMT 0)
thanks for all the input-we are trying to absorb all of this info. Your thoughts are so helpful...again, thanks!
Posted 4/30/2006 12:38 AM (GMT 0)
Dear Max's Mom-
How did you find out that Max had CF? Did he have symptoms or did you find out the baby you are carrying had it and then got him tested?
Posted 4/30/2006 1:27 PM (GMT 0)
When I found out I was pregnant this 3rd time I was tested to see if I was a CF carrier. It was given amongst the initial prenatal screenings. Once I found out that I was a carrier, my husband was then tested. Once his test came back positive, we signed up to do a CVS which can tell if the baby has CF. While we waited for those results (takes 10 days) we tested Max and my other daughter. I had read on the CF websites that CF can show up at any time during a child's life, so I thought I'd better get these 2 tested. Max had upper respiratory problems from about 2 weeks old, but then this last year he's hardly been on a nebulizer at all. His stools are somewhat soft, but not that I'd noticed to be out of the ordinary. He's always been on the smaller side weight-wise, not height.

The baby's test results came back positive and then 2 days later Max's came back the same.

Double whammy.....
Posted 4/30/2006 2:55 PM (GMT 0)
Oh, how upsetting. I am terrified waiting for my husband's test results to come back. If you'd never taken the test, you might of just thought Max had asthma or something. I wouldn't be so worried if my son Ryan hadn't had pneumonia in January. Talk about being in a parallel situation. Thank God your daughter is CF free. Do the doctors think Max has a mild case? That would be a good thing. I am sure there will be a way to treat this like diabetes somewhere in the near future.
Again, I am so sorry. Please keep us updated on Max.
Posted 4/30/2006 6:39 PM (GMT 0)
I should probably mention this, seeing as how its come up, but there are also many sideeffects to CF, you may want to take this into consideration: CF related diabetes, osteoperosis, CF related arthritis, GERD, asthma. Those are the ones that I can think of off the top of my head. I have CF related diabetes as well, and am yearly tested for osteoperosis. They dont start testing for this until you are 18 though. And I do have some joint problems.
Posted 4/30/2006 8:14 PM (GMT 0)

Max's Mom,

How far along are you in your pregnancy? I just read your last post about how you found out your baby and your son both tested positive for cf. Isn't is amazing how just a routine test can change your whole life? I know this is soooo hard. It really does help to have people that understand what your going through to talk to. It does sound like your son is doing really well though.....considering he has not really had treatments and enzymes for his first 2 years. At least you did find out now though and he can get started on the preventative treatments while he is still very young. How much does Max weigh now and how tall is he? And when did he turn 2? I am so sorry you are having to go through all of this....I just know that for us the first few weeks we were just in shock and I know what you are going through. You will make it though and most importantly with your help so will your boys!

Posted 4/30/2006 8:25 PM (GMT 0)

Dear m&ms,

Hi! I just wanted to tell you about our experience. When my son at 2 weeks of age tested positive for cf we had my then 5 year old tested the same week. He had already had several bouts of pneumonia and I was like you TERRIFIED because of this. He has never been underweight and has always been tall for his age so I had to keep reminding myself that that was good! So his test results finally came back and he was NEGATIVE!!!! So try not to worry too much about your son....especially since your husband has not had a positive test yet! Just thought I would try and help ease your mind. I know the waiting can be pure torture!!

Posted 4/30/2006 10:17 PM (GMT 0)

Hi Max's Mom, Welcome to HW CF Room.

We hope you find comfort here on HW.  I certainly can sympathize with your feelings right now.  I have twins with CF.  Double whammo!  The first 3 yrs, with both being in critical shape it was very hard on me, but, I survived! and you can too!.  We as parents all have set backs, but, someone seems to come along (in my case when I am feeling down) that has a disease or handicap that is extremely worse than my twins.  At that moment, my overwhelming sad feelings seem to go away for that moment. 

My suggestion to you is:  I assume your newly pregant? by the time your new baby comes along, you will be well on your way to being an experienced CF Mom.  Don't fret! it won't be hard as having two diagnosed at the same time.  Since my twins advance at the same rate with this disease, they develop being sick at the same time.  It's possible that you can have only one sick at a time due to the age differences and this will help you quite alot in terms of treatments and regimine...etc.

If you have any specific questions, feel free to ask.  Someone will have a helpful answer, suggestion, a comforting hug.

Please do skip on over to the thread:  Sound Off:  CF Member Room and add your info.  Someone will learn something about you and your family.  You will learn about the folks we have here on HW who are affected by CF.

Again Welcome tongue

Here's a shoulder to lean on, and a comforting hug (((((((Max's Mom))))))))

Addition to my post:  Right now, you are in "overdrive" trying to research and learn as much as you can about CF.  Please, do, take some time for YOU and YOUR BABY!  This can wear you down if your not careful.  Let your husband be your health manager while you research and learn.  Have him keep an eye on you that your eating and taking care of yourself because if your baby has it, the baby needs alot more nutrients right now to help it gain weight.  You can get overwhelmed by the vast amount of information, please be careful. 

Posted 4/30/2006 10:27 PM (GMT 0)
I would also suggest that you check out this site, it has a plethora of information on CF:

http://forums.cysticfibrosis.com/index
Posted 5/1/2006 12:07 AM (GMT 0)
Dear Momof2boys1girl-
THANK YOU for sharing your story. It really made my evening! Everyone calls my son 'Tank' since he is so darn big, so that gives me hope! I wanted to share about something I read on another website - a pregnant woman did the routine CF test and it turns out SHE has CF and didn't even know! If someone can go through that much time without even a worry, then there is hope as every case is so different. I definiteyl think it is great that Max has done so well for so long without you even being concerned about it!
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