PLEASE HELP ME :(

[JENNIFERA]

I am six months pregnant and my daughter (due June 19) was diagnosed with CF. My husband and I are both carriers of the CF gene. I am so sad for my little girl. This is a battle with no cure. I am trying to be strong for her but it is so hard. I am so emotional already because I am pregnant. Any advice anyone can give me would be wonderful. I am lost and don't know what to do or where to begin with this.

<img src="i/expressions/brokenheart.gif" border="0">

Jennifer

 

[LindseyRose]

You've come to the right place for support! The fact that you know your daughter has this now is great, although it may not seem that way. You will be much more prepared and knowledgable when she finally arrives! Not to mention that you can start treatments on her immediately. There are so many horror stories on here about people going back and forth to the doctor and getting the runaround for months or years before their child is finally diagnosed. Your daughter is being born at a great time, technologically speaking. There are so many treatments and devices that will help your daughter live a wonderful life. Don't be discouraged by lifespan numbers. Personally, I'm 23 and getting married in May. I have lived a wonderful life with no regrets. The best thing that you can do for your daughter is to have a good attitude about CF and to be compliant with her treatments. Teach her to do the same as she gets older! Good luck, and welcome aboard!

 

[JENNIFERA]

Thank you so much for all the wonderful things you said . For the past few weeks during all of this it has been devastating. The doctors and counselors make it sound like a death sentence. Knowing I can come to a place like this and find comfort is so wonderful. A lot of people are against amnio's but I needed to find out what was wrong with ehr. The whole reasoning behind this testing was that they found an echogenic bowel in her last ultrasound and that is one of the findings for Cf. So we had all the tests done and the results came out this way. As far back as we can go we can't locate this disease in either of our families. My husband's family was shocked as well as mine.

Thanks for all the support .

Jennifer <img src="i/expressions/rose.gif" border="0">

 

[Emily65Roses]

As Lindsey said, it's actually a good thing that you found out so soon. I know many CFers who didn't get a diagnosis until adulthood and are in crappy condition because they weren't getting CF meds all their life. The fact that you know now allows your daughter to get the best meds and treatment possible from the very beginning. That will be a huge help to you and her throughout her life. Also, as Lindsey said, the technology is getting better and better. Let me just tell you this to see if it brigthens your spirit a little bit. When I was born, in 1984, my parents were told that I wouldn't graduate high school; not becuase there was anything wrong with my brain, but because I wouldn't live that long (and that's just 18 we're talking). Now I'm 21, and still going strong. So even IF your doctors were to say to you "your daughter won't live to see... 35" (guessing now, because the median life expectancy is 32), she'll be likely to live far past it. The life expectancy changes ALL the time. In my 21 years it has gone from 18 to 32. Pretty big jump. CF isn't the death sentence it used to be.

And this may sound odd, but hear me out on it. I've said this a thousand times before; CF has made me and those around me better people. CF makes you grateful for every day you have. You smile more, you laugh harder, you love deeper, you enjoy learning, you smile and laugh at and enjoy simple things like rain and snow. It makes you more compassionate, more understanding, more intelligent. This won't make sense to you either, but if I could go back now and be born without CF, I would NOT take that opportunity. I'd be a much different person if I had never had the CF, and I like who I am. I like who CF has made me. My boyfriend Mike likes how I appreciate all the "little things" as cliche as that sounds. And he knows it's because of the CF. Since he started dating me, he's begun to enjoy a lot more of the little things as well. It rubs off on those around you.

In other words, CF may sound like a death sentence... but it's not. CF may seem like the end of the world... but it's not. CF may look like it's only full of negative aspects... but it's not. And the fact that your daughter is being born in 2005 can only be help to her. I was born in 84, which is a lifetime away technologically speaking, and I'm 21, still doing pretty well. That should give you a clue about your baby's chances being born now.

Oh and something my first CF doc told my mom that she still quotes: CF kids are born prettier and smarter to make up for the crappy health. So your daughter is destined to be a gorgeous genius. Hehehe. <img src="i/expressions/rose.gif" border="0">

 

[anonymous]

I was six months pregnant with my daughter, when I learned that my 3 year old son had CF. We thought he was perfectly healthy despite a few "minor" issues (a little small for his age, a healthy appettite, and these weird stools), and it was like I crashed into a wall. One minute excited about my pregnancy and the next in a state on despair. We knew our unborn child could have CF also, but could not bear to find out at the time (when she was 2 weeks old we learned she did NOT have CF). I was in such a state of mourning - I would cry on the floor of my son's bedroom as he slept (not comfortable considering how fat, uh-excuse me, PREGNANT I was). When we first got the news the doctors said "Your son has cystic fibrosis" - but despite how positive the doctorw were, my heart interpreted it as "Your son is going to die". However, it was hard to spend too much time in my depression, I had this beautiful happy little boy wanting my attention. I've had to accept the fact that I don't know what the future holds (good or bad). Nobody is born with an expiration date. I don't waste much time worrying about things I can't control.

Because of the echogenic bowel, it is possible that your daughter will be born with meconium ileus. Inability to pass the first stool requires surgery. I don't know much about it, but many of the posters here do have experience with it. It is quite common in people with CF. In all likelihood, your little girl won't have an issue with it. But just in case, please know that it happens and your daughter will get through it just fine.

You are right: This is a battle with no cure. But what I have learned is this: It is a battle with hope. I'm not talking false hope - but real reason to hope for a long fulfilling life for your daughter. You are not alone. Everyone here is fighting right beside you.

Jena
4 year old son with cf
1 year old daughter no cf


p.s. As for me and my husband (as well as MANY MANY other CF families), we could find no family history for CF.

 

[Emily65Roses]

As Jena said, that might indicate that your daughter will have meconium ileus when she's born, which often requires surgery. I had meconium ileus when I was born, and had surgery at 2 days of age. If you have any questions about this, feel free to ask. I may be able to help.

 

[JENNIFERA]

I can't thank you guys enough. Everything you are saying makes things seem so much more hopeful.

Thanks again.<img src="i/expressions/rose.gif" border="0">

 

[JENNIFERA]

What exactly is meconium ileus? The genetic counselor said something about it but didn't get into to much detail.

 

[Emily65Roses]

Every baby has their first bowel movevment, called meconium. It's thicker and stickier, and not really like normal stool, but that's basically what it is. Meconium ileus is when it gets stuck in the baby's system. For the first two days of my life, they tried all sorts of laxatives and enemas, and nothing worked. Finally when I was 2 days old, they rushed me to a bigger CF-qualified hospital and performed surgery on me. They cut open the abdomen and remove the blockage that way.

 

[JENNIFERA]

Thanks for the information. You have been a HUGE help. I can't thank you enough you have changed my outlook on this whole thing. I am much happier knowing I can talk to people about this and get positive results.

 

[Emily65Roses]

Good!! <img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[anonymous]

Hi
You dont know me but I kinda no where your coming from
my oldest brother has Cystic Fibrosis
you see your lucky cuz you r prepard for it
you have someone to support you
My mother when she had my brother wuz about 18
she was alone no one to support
she had no idea she carried the gene
She had no idea my brother had it either
all she new was he was a very sick baby
She went to the docs and they told her she was just a terrified mother who didnt no anything
My brother was only a baby who couldnt tell anyone what was wrong
finnaly someone listened to her it was almost to late
you should consider yourself lucky that you can prepare and you can find out about it
Im not tryin to make myself seem soo much better but im just saying that there coming up with many new advances in it
You need to give the baby alot of support because when your child is growing up there is going to be alot of rough times for him/her
just keep on believeing and praying and take a deep breath and luv ur child no matter what
no that ur child is strong
dont let this diease beat you
beat it
your child can live an ok life
make sure you have good medical
because my brother has been scewed by the system
but just to let you know ur kid will surpase the averages of how long they will live '
my brother wasnt supposed to live past a month then 2yrs 12 then 16 then it went to about 20 or so now its early 30's late 20's
he is 27
and im soo proud of him for he is much stronger than anyother person ive ever met and im sure your child will be just as strong

yours truly
someone who wants to help another person get through something

 

[anonymous]

Hi Jennifer,

Just wanted to let you know that my heart goes out you. My son was diagnosed at age one with cf. He is doing so well now. We work very hard at keeping him healthy, but overall, he is a normal and very strong little boy! You'd never know by looking at him that he had cf. We have come so far with the disease. A little over a decade ago, the life expectancy was only in the teens and now it is past age 31 (maybe higher now). Our pulmonolgist said to my husband and I (and I quote) - "I expect we will have a definitive solution within the next 5-8 years." That doesn't necessarily mean a 100% cure, but close. Researchers and gene therapy have come miles and miles and I truly believe a cure is not far away. Your daugher has a bright future. As long as you are willing to accept her diagnosis and work hard to keep her healthy (physically and emotionally), there's no reason why she can't live a long, happy, and healthy life. You are more than welcome to email me with any questions. You'll be in my thoughts and prayers. Hang in there. <img src="i/expressions/face-icon-small-smile.gif" border="0">

Carey
Bono40@aol.com

 

[anonymous]

Thank you Carey. I am going to do everyhting I can for her. She isn't even here yet and we are already going to be meeting with doctors and making sure we have everything we need to know. Your words are very uplifting. It is nice to know I can talk and get information, advice, and support from people. How did you find out your son had CF if you don't mind me asking?

 

[anonymous]

Hi Jennifer,
I am so glad you came here for support. I have found this board to be supportive to parents of children with CF whether you post or just read.

We also have no history of CF in either mine or my husbands families. Our eldest daughter was born with CF and did have an echogenic bowel at the 20 weeks ultrasound. We did not do amnio and found out at birth because she had meconium ileus. She was able to pass this blockage on her own in NICU after a few days. My second daughter was also born with CF (echogenic bowel as well). She required surgery to remove her blockage. I just wanted to point out that everyone is different, even sisters!

We gave our second daughter the middle name of Hope because we do have tremendous hope for the future of our girls and for all people living with CF. I loved what Emily said about appreciating the little things in life. We certainly do. I did find there was a period of sadness when older daughter was first diagnosed however once we realized that we were able to care for her and that she could live a wonderful life despite having CF, we were able to look past the fact that she had CF and see all the things that made her wonderful!

Please continue to post. We have all been there and can be a comfort through many of the emotions that dealing with CF on a daily basis arouses.

By the way, I also agree with Emily's first doc. Children born with CF are prettier and smarter than everyone else!!!

Wishing you a happy third trimester!

 

[NoDayButToday]

Hi Jennifer,

Everyone is right, you have come to the right place.

It is really a good thing you learned about your little girl's CF so early in her life. Treatment can begin right away, which is really important-- for her health, and also for her happiness/comfort. A baby without enzymes who needs enzymes is a hungry, gassy, blocked up OR diarheaing, generally unhappy baby.

I, like Emily, also had meconium ileus as a baby. Just to add to what she said, ileus refers to part of the intestine, I think. Mine was spotted on a sonagram when my mom was 17 weeks along, which made them very prepared at my birth (a planned C-section) to operate and deal with the bowel obstruction as quickly as possible. I was also the first (and only) member of my whole family to have CF. CF is rare to have since it is a recessive gene, but also, it was only identified in 1938, so it is possible family members had it before it was even known as a disease (that was kind of irrelevent, though).

What is important in CF care is being compliant with treatments and staying positive. Does being compliant prevent progression? No, but it slows it tremendously. The better shape your lungs stay in for as long as possible, the better! I tend to agree with Emily's doctor about us CFers being pretty and smart-- all of us CF kids (who later grow into CF adults) have this sort of 'spirit' or attitude about them that is hard to put into words. I'm almost 16, a sophomore in high school. I take Accelerated level classes, manage field hockey and softball, am on debate and in the school band! Despite CF, I definitely lead a full life, as your little one will too (have you thought of any names yet?).

I'm so glad you found us here. <img src="i/expressions/face-icon-small-smile.gif" border="0">

I just read this over and realized it wasn't especially informative, but I just wanted to get out there that I, like everyone else, am here for you. <img src="i/expressions/heart.gif" border="0">

 

[anonymous]

Hi Jennifer,
Well I am sure that after reading a few posts here you are feeling much better!
I think that there is a lot of wisdom and positivity on this forum that doctors and social workers can't really help us with because they don't deal with it every day.
I too was devastated to discover my boy had CF, he also had a echogenic bowel at 20 week scan but after a week later another scan showed as normal so we didn't think any more of it.
He didn't have Meconium Ileus at birth but was the opposite and had it all through my waters.
I like most other parents here am really positive about my sons future.
He does everything and more that other children do with or without CF and I am really proud of him in every way.
It took me ages to get over the whole life expectancy thing also, but after reading the posts here and seeing the ages of everyone I realized that I cannot focus on that because it would be unfair and as everyone has proved probably not going to mean anything for my child.
I wish you the best of luck for the last few weeks, I am also pregnant( 32 weeks) with my second baby so I know it is a emotional time!
Rebekah
Mother to Matt 22mths w/CF and baby on the way wo/CF

 

[anonymous]

Everyone on this forum is so positive and again it has changed my whole outlook on this. This morning I so upset but now I feel so much better. The more information I get from people the better it is making me feel. Thanks again everyone. Feel free to email me anytime at js7881@wideopenwest.com.

Jennifer

 

[JENNIFERA]

In reply to NoDayButToday:

You seem like a very strong girl. Her name is Alayna Madison. Everything you said really gave my husband and I <b>HOPE</b>. So far all the advice and support from everyone here has changed our thoughts and outlook on CF. I want my daughter to live a very full life. After talking with genetic counselors and doctors for the past month I had no hope left. But thanks to everyone here I am so much more positive. And I thank everyone for that <img src="i/expressions/face-icon-small-smile.gif" border="0">.

 

[anonymous]

Jennifer,

I too am glad you have found this site. I am not a parent of a child with CF, nor do I have CF but I am the wife of a wonderful man who just happens to have CF. My husband has still been able to live a productive life and does most of the same activities his friends do, if not more. CF can be tough at times and just a life goes it isn't without its downs but I don't believe he would be the man he is today, with the goals and desires and principles that he has if he didn't have CF. He, just as others on this site have said, does not let CF define him but it is just something he has.

My husband and I go out dancing, have romantic evenings, play basketball, soccer and football, we take our dogs running, we lift weights at the gym together (not so romantic), we go camping, hiking, skiing, swimming-and that's just to name a few. I think I am rambling now, but the outlook is not that grimm. I am sorry that the doctors and genetic counselors made it seem so hopeless to you, but am glad you have found this site and these people to talk to.

This may or may not be relevant, but a week or so Emily started a post where we all put our pictures. I am going to post on it so it comes up at the top of this page and you don't have to search. There are pictures of many people with CF and their families. I thought it might give you some hope and inspiration to you and your husband.

Julie (wife to Mark 24 w/CF)