Our Baby daughter Aven was born on April 25, 2012, three weeks early. We had no knowledge, that we could recall, that would have given us any indication that Aven would be diagnosed with CF. SHe too has DDF508. We learned through our states newborn screening and then recived confirmation from genetic testing all within 18 days of her birthday that she had CF. Many mothers I have visited with....1) did deliver early and 2) yes have had there babies go through surgery due to blockage of the bowel. Aven did not have to have surgery.....we did start to notice a very swollen belly and horrible stools in her diaper, but once we were able to get the correct dosage of enzymes, she has thrived. SHe is now 5 months old, and honestly, there has not been a day since her diagnosis that I have not cried. Even though our lives have changed in ways we could have never imagined, she is so very much a part of our family and is such a delight in every way. Please feel free to check out my early blogs in regards to what we were and still are experiencing with Aven. http://autumndawnpalmer.blogspot.com
20 Weeks Pregnant and found out baby has DDF508 CF - What to expect, and what to do?
- Thread starter dougs280z
- Start date
We did not know prior to delivery that our Baby Aven would be diagnosed with CF. She was born this year on April 25, 2012. I delivered her 3 weeks early. All of our ultra sounds appeared normal and there was never any knowledge, that we could recall, that would indicate that Aven would be diagnosed. SHe has both mutaions of the DF508. We were told as that her mutations are the most severe; however, are reminded by her CF team constantly that since it is the most common and the one that was first discovered through sequencing that there is more data out there, including negative outcomes. (hope that makes since) I have since met several mothers whose children have this mutation and yes several have had surgery due to blockage of the bowel. Aven however has not. SHe is now 5 months old. SHe was diganosed through newborn screening at 9 days and by day 18 from birth we had confirmation through genetic results and began her on her enzymes......knowing early and getting her on her enzymes is why we beleive she is thriving today. There has not been a day since her diagnosis that I have not cried (honestly). Eventhough our lives have changed in ways that we were not prepared, I can not imagine her not being a part of our family. please feel free to check out my early blogs and the pictures posted: http://autumndawnpalmer.blogspot.com
G
Gorf
Guest
Dear Dougs280z,
I am 47 years old with ddf508x2, diagnosed at 3 years old for not gaining any weight for 18 months and loose stools. Parents where told I would not live past 18. With the proper health regiment and love of family, wonders will never cease. As a child I was very active(keep the video games away, or very least limit them). Trampoline does wonders. Got one for my 5 year old and I used it more back then, my lung functions(fev1) actully improved after a does of antibiotics, which the doctors where please about. Oh yea, did you catch the statment 5 year old, I have a son they said I couldn't have as well. My parents never had to make the decsion you are faced with. At times its not the easiest life, but I cherish every minute, God doesn't let anything happen you can't handle. I now have a Grandchild that will be 3 year old next month. A wife I adore, and am ever so happy. I have challenges now and sure will be in the future, look around, everyone does. Its how you face them that counts. I am sure by reading your post your child will blossom to there fullest and have the love they need. God bless.
I am 47 years old with ddf508x2, diagnosed at 3 years old for not gaining any weight for 18 months and loose stools. Parents where told I would not live past 18. With the proper health regiment and love of family, wonders will never cease. As a child I was very active(keep the video games away, or very least limit them). Trampoline does wonders. Got one for my 5 year old and I used it more back then, my lung functions(fev1) actully improved after a does of antibiotics, which the doctors where please about. Oh yea, did you catch the statment 5 year old, I have a son they said I couldn't have as well. My parents never had to make the decsion you are faced with. At times its not the easiest life, but I cherish every minute, God doesn't let anything happen you can't handle. I now have a Grandchild that will be 3 year old next month. A wife I adore, and am ever so happy. I have challenges now and sure will be in the future, look around, everyone does. Its how you face them that counts. I am sure by reading your post your child will blossom to there fullest and have the love they need. God bless.
Hi Doug. I am 27 years old with Cystic Fibrosis. I have one delta f508 mutation and a W1282X mutation. I too, had an obstructed bowl when I was born, also known as a meconium ilieus. I was two months premature, weighing 4 pounds and rushed immediately to surgery. I spent the first 73 days of my life in the hospital. When I was born the doctor told my mom that I probably would not live past the age of 5 due to CF and CF complications. Luckily, the doctor was wrong and I turn 28 in December. 
There has been amazing strides throughout the years with new medications that help to prolong my life and others with CF. I consider myself a dinosaur in the CF world haha because when I was born there was only a Tobi nebulizer and my mom would clap my chest with her hands to get the secretions out of my lungs. Now there is a plethora of machines and medications to help get the secretions up. I wanted to let you know that everyone that lives with CF has different experiences. I take enzymes to digest my food along with tons of other medications and I have my share of challenges as well as hospitalizations, but I enjoy the times in between. My view on CF is these are the cards that I have and now I have to play them. And of course being that I'm competitive, I want to win hehe. I know this might sound cheesy but, I've learned that everyone has challenges in this world, it's how we deal with them that makes us rise or fall. The best part about this forum and the CF community is that everyone is so supportive, congrats to you and your wife! P.S. I've included a video that was made a few years ago that discusses my life with Cystic Fibrosis and how CF affects me. http://www.youtube.com/watch?v=jE58Q_d4g9s
There has been amazing strides throughout the years with new medications that help to prolong my life and others with CF. I consider myself a dinosaur in the CF world haha because when I was born there was only a Tobi nebulizer and my mom would clap my chest with her hands to get the secretions out of my lungs. Now there is a plethora of machines and medications to help get the secretions up. I wanted to let you know that everyone that lives with CF has different experiences. I take enzymes to digest my food along with tons of other medications and I have my share of challenges as well as hospitalizations, but I enjoy the times in between. My view on CF is these are the cards that I have and now I have to play them. And of course being that I'm competitive, I want to win hehe. I know this might sound cheesy but, I've learned that everyone has challenges in this world, it's how we deal with them that makes us rise or fall. The best part about this forum and the CF community is that everyone is so supportive, congrats to you and your wife! P.S. I've included a video that was made a few years ago that discusses my life with Cystic Fibrosis and how CF affects me. http://www.youtube.com/watch?v=jE58Q_d4g9sHi all. I just wanted to update everyone that may have been involved with my original post. Anyway, we welcomed Natalie Grace into the world on 1/25/2013. She pooped within the first couple hours and hasn't stopped since. Her weight gain has been excellent and so far is a peaceful happy newborn. We meet with the CF clinic on 2/11 so we should learn a little more then. I attached a picture for anyone that is interested of my wife and Natalie. Thanks again for all the help!
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Doug:
I am 73 and I have CF. I was a competitive swimmer and worked 5 summers for the Commonwealth of Massachusetts as a Lifeguard on an Atlantic Ocean Beach. I played college varsity basketball (poorly but I played).
Your child can and will have a full and relatively healthy life.
Bill
I am 73 and I have CF. I was a competitive swimmer and worked 5 summers for the Commonwealth of Massachusetts as a Lifeguard on an Atlantic Ocean Beach. I played college varsity basketball (poorly but I played).
Your child can and will have a full and relatively healthy life.
Bill
Hi Doug, we were in your position almost exactly 1 year ago. Our little girl was seen to have echogenic bowel on her ultrasound, and carrier testing revealed that we were both DF508 carriers. Echogenic bowel is a relatively non-specific finding, and does not necessarily equate with meconium illeus. Additionally, the majority of cases of meconium ileus can be handled non-surgically using enemas. Our daughter, ended up having a meconium plug which cleared after one enema. She is now an incredibly adorable 6 month old with CF, and we love her more every day.
I am sure the feelings and emotions you are having right now are incredibly stressful, when I found out our little girl had CF and might need to have surgery immediately after birth I felt like I was drowinging. I have two pieces of advice that helped me through that time. The first is to take things one day at a time. Things will happen as they happen, and worrying and stressing will not change them. The other piece of advice I have is to find a cystic fibrosis center near where you live and make an appointment to meet the doctors and talk to them. They will be the best source of information on the disease, not any chat board or website nor even a regular pediatrician. You can look up CF centers on the cystic fibrosis foundation website, cff.org, and even see their outcome data. I would also make plans to deliver at a large hospital with a Level 1 NICU so that, in the case your baby does have meconium ileus, she will receive the best care.
Good luck on dealing with this difficult time. Through it all, remember that she will still be your perfect baby when she is born, and nothing will change that.
Julie
I am sure the feelings and emotions you are having right now are incredibly stressful, when I found out our little girl had CF and might need to have surgery immediately after birth I felt like I was drowinging. I have two pieces of advice that helped me through that time. The first is to take things one day at a time. Things will happen as they happen, and worrying and stressing will not change them. The other piece of advice I have is to find a cystic fibrosis center near where you live and make an appointment to meet the doctors and talk to them. They will be the best source of information on the disease, not any chat board or website nor even a regular pediatrician. You can look up CF centers on the cystic fibrosis foundation website, cff.org, and even see their outcome data. I would also make plans to deliver at a large hospital with a Level 1 NICU so that, in the case your baby does have meconium ileus, she will receive the best care.
Good luck on dealing with this difficult time. Through it all, remember that she will still be your perfect baby when she is born, and nothing will change that.
Julie
Hi Doug. My husband has CF and he did not find out until my son was born.
My son was in/out of the hospital the first year of his life....he struggled greatly until we found out he has CF. Our son is now 8 and is doing fantastic and thriving!
My friend has a 17 year old daughter with DDF508. She too was born with a echogenic bowel and had surguey at birth. She is a gorgeous teenager now living a good life!
Yes, CF is an awful, awful, awful decease. This is why a cure in our children's lifetime MUST happen!! That said, all of the above is also true. Do not be swallowed with the 'what if's' like I did. Your baby's story will be unique to him/her. Take each step as it comes.
My son was in/out of the hospital the first year of his life....he struggled greatly until we found out he has CF. Our son is now 8 and is doing fantastic and thriving!
My friend has a 17 year old daughter with DDF508. She too was born with a echogenic bowel and had surguey at birth. She is a gorgeous teenager now living a good life!
Yes, CF is an awful, awful, awful decease. This is why a cure in our children's lifetime MUST happen!! That said, all of the above is also true. Do not be swallowed with the 'what if's' like I did. Your baby's story will be unique to him/her. Take each step as it comes.
hello;
I am so sorry for the fear u must have been dealing with. I know that when the drs give a diagnosis and brief description, they don't realize how terrifying the ride home can be. I was diagnosed at age 1 after 3 different hospitals couldn't tell them why I wasn't getting any nutrients from my food. They ended up at children's hosp. hearing 'cf' and some not so positive predictions (30 yrs ago). I am 31 now and they are still recovering from the shock of that day...
Growing up I had to take meds, and chest pt, with bronchitis a couple times a yr, but I didn't really notice anything different until I was about 10. Once there is a routine, it becomes second nature. I was never jealous of my siblings being healthy, but they weren't really around too much. They were a little jealous of the extra attention I got, but if you include your other daughter in the process that shouldn't be a problem.
I love my life! thank-you for giving her the chance to be a part of your family. I am happily married with a spoiled dog. Currently not able to work, but that won't last for long. My family would tell you that it definitely was worth it. They are waiting patiently right now for me to join them(OXYGEN)
I am so sorry for the fear u must have been dealing with. I know that when the drs give a diagnosis and brief description, they don't realize how terrifying the ride home can be. I was diagnosed at age 1 after 3 different hospitals couldn't tell them why I wasn't getting any nutrients from my food. They ended up at children's hosp. hearing 'cf' and some not so positive predictions (30 yrs ago). I am 31 now and they are still recovering from the shock of that day...
Growing up I had to take meds, and chest pt, with bronchitis a couple times a yr, but I didn't really notice anything different until I was about 10. Once there is a routine, it becomes second nature. I was never jealous of my siblings being healthy, but they weren't really around too much. They were a little jealous of the extra attention I got, but if you include your other daughter in the process that shouldn't be a problem.
I love my life! thank-you for giving her the chance to be a part of your family. I am happily married with a spoiled dog. Currently not able to work, but that won't last for long. My family would tell you that it definitely was worth it. They are waiting patiently right now for me to join them(OXYGEN)
S
shellbuggy
Guest
I am the mother of an 11yo with ddf508. She was diagnosed at 15 months. She was hospitalized for the first time at the age of 8. Since then she has been in only 3 other times. She does everything she wants and lives a good life......as long as she does her treatments and airway clearance. The only time she complains about her CF is when she is actually doing her treatments. Don't become overwhelmed by all the information you are going to get. Take it one day at a time!
I am so sorry to hear that you have learned this news. I remember well finding out our son had CF when he was born. He is now four. He also has double DF508. While there is no way to predict with certainty how any given child will do, our son has done well. He has been in the hospital one time for IV antibiotics. He goes to preschool, swim lessons, play groups......he is just like any other four year old child. Our life is different--he has treatments morning and evening. He takes medications with all meals to aid in digesting his food. I know there may be many more struggles ahead. Nevertheless, I would not change a thing. He is perfect in our eyes and we couldn't possibly love him more. So many new advances are being made in CF treatment. I am hopeful about my son's future, and about your daughter's future as well. Congratulations on your wonderful child. I hope this forum can provide you with support and advice.