20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?


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Wow, I was in your spot almost a year ago... I am very sorry for you and any decision you make, you will live with for the rest of your life. That being said, this was the best way for my husband and me to find out.

We found out our youngest son was going to have CF in utero with an amnio. Though the news was devastating, we are planners and were able to line up our doctors at the CF clinic, meet them, get all kinds of literature to prep us for life after birth and even talk with a family who had a child with CF all before his birth. No one could prepare enough for the arrival of a child with CF, but fortunately things are better than we ever hoped. Luckily our CFer was our third, so a lot of the things for him are just 'baby' things and not CF things. 90% of our day is baby and the rest is CF.

While we have been doing CPT, inhalers and enzymes since Day 2 of life, he is pretty much a fat, easy going baby. I think since we started all of our CF things so early, it has to have helped him be better off than finding out later due to newborn screening or failure to thrive (we didn't have echogenic bowel.) We are very careful with flu shots, washing hands up to our elbows constantly and making certain no one is sick around him, but he has two older brothers who are germ factories so we take it one day at a time. I would suggest not to read the stuff on the internet about CF, unless it comes from the CFF site. Our pulmonologist agreed because I was crying every day about the future for my son before he was born. Now I feel more hopeful, especially when I hear from families with older CFers and seeing how well he is doing.

Our older sons love their brother so much and often try to do CPT on him when we are not looking! Our oldest wants to learn how to do 'pat-pat' so he can do it when we go into heaven! We manage to get it all done (CTP, enzymes, taking care of our other children, having fun and living) because it has to be that way. You may want to have a little notebook to write down everything (enzyme times, poops -what they look like, vitamins, etc.) because it has been very helpful when calling the CF nurse to adjust enzymes or prune bottles or whatever during the first couple of months with a newborn. It's convenient to see how he has been doing over the past couple of weeks, which you can't remember all the time. I still use it now that he is almost 6 months. You will never know so much about your kiddo's poop! :D

Your story touched my heart because it seems very similar to where we were at not too long ago. This is the first post I have ever commented on, because it reminded me of our situation not too long ago. Remember, you can do this. There is so much that is within our control with CF, so my husband and I hold on to that. I hope this information is helpful.


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Doug, I can give you a different perspective than just about anyone else on this site. My son died from CF in July at the very young (even for CF) age of 10.

What I can tell you, is while his time was short and filled with struggles, I can't imagine him not having been part of our life. Life with CF is not easy, but it is not the end of the world. Patients with CF live, love, laugh, play and make a difference on this earth.

Don't ever let the fear of the future scare you, focus on today and preparing for the road you are now on and know that it WILL be worth every struggle, every tear and every long night trying to sleep on a hospital bed beside you child.


New member
Congrats on your new little girl! We were in a similar situation - echogenic bowel at 20 weeks with a healthy 2 1/2 older child. Only our OB/GYN told us not to worry about it, it was probably nothing. Actually four experienced doctors missed it completely because my husband wasn't identified as a genetic carrier. So you are fortunate to have a smart doctor and answers now! We didn't have a diagnosis until our son was a few days old.

Regarding the echogenic bowel: our son did need minor surgery but we were out of the NICU in under three weeks. Our friends' son did need bowel resectioning and a couple surgeries and several months in the NICU. And it's encouraging to hear that SDavis's child didn't even need surgery! So it appears treatment for meconium ileus really runs on a spectrum.

I'm agnostic/pro-choice so no hidden agenda here but will offer this point: You will never have the opportunity to know this exact child ever again. Just like your first child, this one is unique in personality, appearance and - yes - genetic code! If we knew our child's diagnosis during pregnancy, we still would have kept our baby. The "not ever meeting" our child would have driven us more crazy than the "not knowing how long" our child will be on this earth drives us nuts now. Hopefully that makes sense.

Is it hard? Yes. It's hard on the marriage and family unit the first year, hopefully you have lots of family and friends to give you the breaks you will deserve. For the first year, the enzyme doses will change frequently and drive you crazy. The doctors appointments will double up - appointments with the pediatrician on top of appointments with the pulmonary team. That all slows down after about the first year. She will get used to the breathing and pouding treatments - our son actually can't wait for them every day, he loves it! It's definitely all worth it now that I get to hear him laugh, watch him hug his brother, and see him grow up a little more each day.


New member
I can't imagine how anyone could give up a precious baby just because they have CF. Yes, I understand that it can be challenging news, and there are a lot of thoughts going through your head. My parents had some of the same thoughts when I was diagnosed at age 3. They were shocked and scared about the future, but everything has to be put in perspective. Of course it changed our lives forever, but it’s just something else to deal with.

I will say that CF has been a blessing and a curse. It has shaped me into the person I am today. My doctor is amazing, she has always been very straight forward with my parents and me about my care and what needs to be done. I admire that, because it has shaped me into the very determined, honest, and open person that I am today. I look at what needs to be done to stay healthy (or any other aspect of life) and I do it. I realize that CF can be used as an excuse for so many things, but I refuse to let it take over my life. I am Kathryn first, and then I have cf. So what if I have to do treatments and take lots of medicine every day. Sometimes I even have to spend time in the hospital, or do IVs, or miss out on something because I'm sick, but that doesn't make my life any worse than others. If anything, It gets me a little more attention (who wouldn't like that?). I am always reminded that I am surrounded by friends and family that care about me, not to mention all the doctors and nurses that seriously invest in my life. I wouldn't be here today if they hadn't sincerely taken an interest in my health and my future.

If you are concerned with your child being jealous of an older sibling without cf, don't be. I have an older brother and I have never once thought about his life being better because he didn't have cf. In fact, I always got to spend one on one time with my mom to go to doctors’ appointments or spend time in the hospital. Although those aren't the best circumstances, we had a special bond because of all that. CF is hard, but it helps people grow and mature in ways they wouldn't have otherwise. My friends tell me all the time how strong I am, and how impressed they are with the way I handle my health and everything in my life at the same time. They are taken aback by my perseverance and they put their own issues in perspective. No one has a perfect life, and we are not guaranteed another day, so be thankful for the life you have, I wouldn't change mine for anything.


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My 2 1/2 Daughter has Df508 & g542X - DF508 is the most common, not necessarily the the worst. There are worse- my daughters is worse. They are working really hard for a fix for the lung problems. My daughter spent the first 3 months of her life in NICU. Two major intestinal surgeries and a feeding tube later we brought her home. As much as it hurt me to see her hurt, she is alive and healthy & happy. It is a lot of work. I have decided to leave my good job & stay home to keep her out of daycare. I want to keep her as healthy as possible for as long as possible. Get connected with a CF clinic. They are wonderful and will walk you through it step by step. They have wonderful kids books addressing the issues of jealousy or explaining CF. I have met some wonderful people in the CF community. You will gain strength that you never know you had. I encourage you to embrace what God has given you. She is the biggest blessing I have gotten in my life. Let God handle all the big stuff. You just sit back, cry when you want to cry, take a deep breath, and get excitedly ready for your next adventure. It is scary--- trust me. But God picked your baby for you. He trust you will be the perfect parents for this child. I will be praying for you. My daughters name is Faith- for a reason. Her name reminds me to hope in the things I can't see. Like a cure... God Love you both.


New member
Oh, that is wonderful news!! Anytime you need any advice please ask! Everyone on here is so helpful and supportive! And congratulations!! It will be a challenge at times, but well worth every last moment!! So very happy for you and your family :)


New member
We are in the same situation as you! I am 30 weeks pregnant with a baby girl that has CF. She has DDF508. And we have echogenic bowel on our ultrasound as well. (But our last child also had echogenic bowel but she is just a carrier).

I am active duty military and we live in Virginia. We are extremely lucky bc Portsmouth Naval Hospital has a really great CF clinic. Without the people on this website and Portsmouth Naval we would be so lost. As soon as we found out we were set up to meet everyone. We have talked to everyone at the CF clinic..doctor, nutritionist, social worker etc...the social worker is also available to my 12 year old as well so she can understand whats going to change in our lives. She is old enough to understand and we talk to her about everything but we also know she may not want to tell us things that she may tell someone else. Her fears etc...

Because of the echogenic bowel they set us up to talk to a pediatric surgeon who explained everything in detail in case she had to have surgery...which is enough to make you cry but at the same time the wealth of knowledge that we have now verse when we first found out is incredible and I feel so much better knowing the worst case scenario and we just pray for the best. Meeting the surgeons was scary but also made me feel better knowing that if surgery is needed she was in capable hands. We have appointments every 2 weeks with an ultrasound every month just to keep an eye on everything and we are ecstatic and patiently waiting for this little one to come and bless us with her presence.

Good luck and feel free to message me if you need to! I don't know much on the day to day yet but we will soon! We are due Nov 25th, a little turkey baby!


New member
Congratulation sierradavis!!!! So happy for you!! Sounds like you are well on top of everything!! What a way to celebrate Thanksgiving!!


Congratulations on your newest baby girl! My second daughter was diagnosed with an echogenic bowel at 19 weeks. She actually lost 2/3rd's of her small intestine and the amniotic fluid backed up in the top end until it popped and let the fluid out in her abdomen. She had surgery at a few hours old and had an ostomy for 3 months and a PICC line for 4 months. It sounds horrible and I wasn't sure I would survive it to be honest, but I did. She did, too. She is now 15; beautiful beyond belief, sings like an angel, and one of my biggest blessings. CF is a terrible disease, but so are many other things. I have never regretted fighting for her life with all my being and I never will. Put her in God's hands, learn to see the silver lining, and take the rest in stride. Find the best pediatric gastroenterologist, pediatric surgeon just in case, CF center, etc. Never take no for an answer.


My heart reaches out to you. I know first hand what you are going through. I was in your shoes almost exactly just earlier this year. Because of echogenic bowel seen on US, and then subsequent carrier testing and amniocentesis, we found out that our sweet boy had DDF508 CF during my pregnancy. I'm very thankful however that we found out during pregnancy because this allowed us to prepare in so many ways for the arrival of our baby. Once he was born we were able to enjoy our new baby. I couldn't imagine having those early moments with a new baby traumatized by finding out he/she has CF, that would be so hard. We had already gone through our stages of grief and were ready and accepting of our new baby.

Echogenic bowel does not mean baby will need surgery. There is the risk of CF babies having meconium ileus (I believe 10-20% depending on your source), and even then it can sometimes be treated with enemas. You should be prepared for it, but hope for the best and not expect it.

I couldn't imagine my life without our wonderful baby boy. We have an older child who is healthy and doesn't have CF, he is active in helping with the baby and is aware of baby's CF, I think in a loving family that helps each other there shouldn't be much problem with jealousy and problems like that, nothing that can't be worked out. Baby is 6 months old now and very healthy. Most days we don't even think about his CF. Giving enzymes every time he breastfeeds took some getting used to, but now is just part of the routine and is no big deal. It's a busy life with enzymes, vitamins, CPT, monthly Dr visits, and more to come but it's not that bad. You learn to do what you can to protect baby from getting sick. However, all in all he is a normal, healthy baby boy and we will do our best to make sure he has a normal life and have the same experiences as his big brother. These days the many, wonderful medical treatments have made it possible for people with CF to thrive and there are very exciting new medical treatments on the horizon! I am a nurse in a perinatologists' office and I see many horrible, sad things that make me very thankful and realize that it could be a lot worse.


Hey Doug, I read your post in the car last week while driving home from the University of Pittsburgh where my 17 yr old daughter with CF was being evaluated for a lung transplant. That's all pretty heavy to hear for someone such as yourself, finding out your 20 wk old baby has CF.
I am glad I didn't respond then, because I don't think my response would have been fair to you or your family. I am always positive, or do my best to "try to be" when it comes to CF, and all the other crappy, difficult, sad and burdensome things happened in my life.
My daughter was laying in the back seat of our car, and when I read your post, I looked over my shoulder at her beautiful face, and thought to myself there is No Life I Ever Wanted to Live without Her having been in it. She is smart, likeable, demanding, challenging, STRONG beyond words, fearful and fearless, loving, kind, compassionate, hilarious, energetic, tall, slender, poised, confident, and MINE! Cystic Fibrosis does not define who is she is, it is just a small part of her genetic make up, along with brown eyes, brown hair, fair skin and freckles! Her value on this earth goes beyond her disease, and her purpose here was to add to universal energy that binds us all together. Our family, and friends wouldn't have been able to show their greatness if it weren't for her existence! She called them to take a voice for her and CF. She is 17 yrs old and still has much more to give to herself, and our family and this world.
Your child will be all the universe has destined them to BE! And no one's life's journey has a promise of health and forever happiness, if it weren't for the sadness's and pain, the Joy and Happiness wouldn't be as sweet! Look forward to the birth of precious child, and celebrate their uniqueness and gift to us all! I promise, you will look at the child as I do my daughter, that there is nothing in this world that could want me NOT to Want her on this Planet for whatever time life gives us!
Blessings to you and your family!


New member
I read the first page of replies and I hope I can help give you some insight on many levels. First off, at 2 weks old I was diagnosed with cf but it was only a couple years ago that I found out it is the DDF508 mutation. Its good to know but honestly it didnt change anything for me, in any way. I have a younger sister and brother (the youngest). My sister does NOT have cf but my brother does and he has a different mutation. As far as the sibiling relationship, I think cf has brought us all closer. Now that we're adults my sister feels bad for my brother and I and she worries about us constantly. As kids though she was jealous. My brother and I got so much attention (being the middle child didnt help her) and she uses to wish she had it too. As we got older, I was able to explain the ins and outs of it so she understood that the attention we got wasn't necessarily good. I didn't start getting hospitalizes until my senior year of highschool and honestly I would take all the pills but never did my respiratory treatments. My lungs are in worse shape then my digestive system and its always been that way. I have a 3 year old boy and he is only a carrier of cf. When I decided I wanted a child, I knew the chances of him having cf were very high. The doctor even asked me at one point if I would terminate the pregnancy if the baby had cf. I was appalled! I felt it would be insulting to my parents since they raised my brother and I learning about cf as they went. They had no idea what to expect. My son is my greatest accomplishment and I wouldnt change anything (even though I'm a single mom). Yes, my health is gradually getting worse as I get older but there are so many new medicines and advances. I send best wishes your way and remember every case of cf is different. Besides, alll you need is love, right?


New member
Hi everyone. Thanks again for all of the insight and helpful comments. We have been getting much more comfortable with the situation and are learning so much. I believe as long as we raise her to be strong in both body and mind, she will be fine. Her big sister will be a great help and is already so interested in the baby.

I have also just registered to run the Pittsburgh Marathon with Team CF! I've always wanted to do a marathon, but never had enough motivation to do it. I do now. If anyone wants to help me raise some money, you can visit my donation page below. We appreciate all the help you have already given us, and I'm sure we'll be asking lots more questions along the way.


Thanks again!


Thanks for putting the link to the run. It was a joy to see your family. May God bless your choice to fight for her life, as he has mine to fight for my daughter's life. I would not have gotten pregnant had I known about the CF, but once I was pregnant, there was no turning back. She has been worth every struggle. I could not imagine life had I not bucked the doctors and had her. Once we named her and told the doctors that she was never going to be aborted and they needed to do whatever was necessary to save her, they got with the program. She had her own stabilization team at delivery and her very own doctor came in on his day off to evaluate her for surgery. Make sure your hospital and doctors are ready to go at a moments notice. Mine would not wait for her due date and came early! We all had our roles planned and it went very smoothly. Her father actually came up with a treatment procedure (he had a medical background in a different field) that they thought was crazy but humored us. She had an ostomy and we would take the semidigested food that came out of the ostomy and syringe it back into the fistula with a catheter. I was tending to an ostomy and changing diapers! When they reattached her intestines she took off without any complications. The food going into the fistula was going into the colon and preparing her colon. Pooped like a big girl right in the hospital. I took her back to meet her surgeon when she was 9...so she could meet the human hands that saved her life. He told me then that that procedure was then completed with a pump (not mom putting in 1 cc a minute with a syringe at all hours of the night) and was semi-standard practice for kids with a volvulus (after the meconium illeus, her intestines tied themselves up and cut off the blood supply, resulting in a loss of 2/3rd's of her small intestine...which with breast milk and blessings have grown to a seminormal level and she is self-sufficient with food by mouth...beautiful, 15, 95 pounds, and I have to give boys dirty looks!). My daughter has inadvertantly saved many other lives because this procedure makes the likelyhood of an excellent prognosis more attainable. For us this is very important. Furthermore, had we not saved this child, we would not have had the medical history that provided the clues to what was wrong with my other daughter....or me. You see, we were 6, 13, and 37 the day we were diagnosed.
Found out baby has CF / 20 wks pregnant

Hi Doug -
Well, I read through most of the posts. I have two boys with CF, 22 and 24 y/o, both double delta 508. They had absolutely lovely childhoods, no hospitalizations at all until after 12 years, and they weren't all related to CF! One through college, with a great social life and he is beautiful, hilarious, deep and in love. The other is 1 year from finishing college and is loving his life. They are both the love of my life. Its hard, as everybody has already mentioned, and its kind of an amusement park ride, but whose childhood isn't? Honestly, you know what you are going to have to deal with (more or less), and that gives you a chance to plan. You never know what the future brings, actually, no? One family that suddenly has to adapt to childhood cancer, who knew? Another has a young adult with late onset schizophrenia, it happens.

Our children both have CF so I have no idea how it would have been if one had not. I know they love each other and look after each other and have deep empathy. Many here have noted that the sibling without CF becomes a very loving and empathetic person. All families have something to deal with, some worse than CF.

Just one teeeeny little advisory: get your insurance in order. For us its just as or more challenging than the disease itself.
Good luck
Isabella in Texas


New member
From a 37 year old with cystic fibrosis (delta 508)

When I was born 37 years ago, my parents were given a very bleak outlook for my prognosis. Despite this, I have now reached the age of 37 and remain very healthy. I have a degree in Physiology and work as a medical imaging specialist. I lead a completely normal life. I have written a blog to share some tips on how I have stayed healthy http://www.cfandhealthy.blogspot.com.au
A baby born with CF today has an excellent chance at a healthy and long life. There is a lot of exciting research currently going on and I strongly believe a cure will be available in the next ten years.
Good luck!
my daughter has two mutations the deltaf508 and the rh117 she was admitted to the hospital at 3 months old for a failure to thrive. she had gone from being in the 80% to the 20% she is now gaining weight i have to do chest pt and neb treatments its so hard for me but i understand i truly do


I am sorry that you have to go through the stress of a CF diagnosis, but I am so glad you decided that your family is strong enough to love and care for your daughter. Many would have been quick to end the pregnancy, but there are so many differences in each CF case, that really is a harsh decision. My CF daughter was not an early diagnosis. I was pregnant with my youngest when I found out I was a carrier. I researched it, and realized all the symptoms fit my older daughter who was then 10. Although I was told it was unlikely she had CF as she was 10 and they are usually diagnosed young, I still had a strong feeling and watched her closely. It wasn't until after my youngest was born that my daughter was eventually diagnosed, and that was just a couple months shy of her turning 11. From the day she was born, she did have some health issues, but not once have I ever thought if I had known while I was pregnant I wouldn't have had her. Nor did I consider it with my youngest while I was pregnant knowing there was a chance she could have it. They are blessings, and you can not focus on the negative in life. We all have problems, whether it be CF or something else, no one on earth is perfect and we all have difficult things in life to go through. I applaud you and your husband for saying CF does NOT make this baby less worthy of LIFE! That being said, since you know early, you will have a much better start at prevention, and as many others have said, there are major improvements in treatments already underway. My daughter is also DDF508, she will be 13 soon... she has some health problems, but she is a blessing and a miracle. It takes special people to raise these special kids, and I agree with your statement that this happened for a reason, you found out early for a reason, to make the best decisions you can for your child to get her the best care as early as possible. It isn't always easy, but when you are facing something new, or hard, this is a great place to turn, full of knowledgeable moms, dads, siblings, friends and CF patients themselves who have been there too. Welcome to the forum, and Congratulations on your second daughter. God Bless <3