My two month old has officially now been diagnosed with CF. We have been having all the tests done and patiently waiting the results. She has two mutations one is in the top 40 the other there is only one known in the data base. We have met with the specialist Dr, Nurtionist, Respiratory therapist they all were very thorough. It is really hard understanding the fact that your child's life expectancy is minimal. There hasn't been a day that has gone by that I haven't cried. This is my only child and I had her late in life (41) I was told I couldn't have children so when she came along I was estatic. Trying to find ways to stay optimistic. Not knowing the answers and the worrying of will she be ok is heavy. I guess I just needed to get this off my chest. I love her so much and now I hold her and don't want to put her down because of the thought of losing her one day. If anyone can recommend anything to help ease the pain I would greatly appreciate it. I have no local chapters the closest one is 2 hours away.
Infant diagnosed-Confused-Hurting
- Thread starter gypsymout
- Start date
Hi there, my name is Sarah. I have a little boy named Johnny who has cystic fibrosis. I'd love to chat with you
When I first found out about our son having CF, my world stopped. I couldn't breathe Talking to other CF moms helped.
Sarah
My best advise is to try and remember who you are. The person you want your child to remember. When I was at my worst, and crying. I told myself what a disservice it be for my child not to know the fun and loving Mommy they had. Each day after I tried better Ask questions & talk.
When I first found out about our son having CF, my world stopped. I couldn't breathe Talking to other CF moms helped. Sarah
My best advise is to try and remember who you are. The person you want your child to remember. When I was at my worst, and crying. I told myself what a disservice it be for my child not to know the fun and loving Mommy they had. Each day after I tried better
Ask questions & talk.We found out ds had cf about a week after he was born. All our expectations and dreams just flew out the window. Our fears that he'd be the lonely sickly child, not have a normal life, not go to school, would die.... Went thru our minds. And then we met our cf doctor who had a teen come down fron the cf floor. She was a normal high schooler, in activities, had a boyfriend, a bunch of friends. So we got into a routine, treatments, meds, took it one step at a time. Another thing we noticed spending 8 weeks in the nicu is that there are always others worse off. Sure we worry, but what are our choices. I do regret worrying so much that I missed out on so many of ds baby milestones. Enjoy your little one and remember she's a normal child who just needs a few extra things to keep her happy and healthy.
My husband and I were in your position 7 years ago. Ironically, when we got pregnant with our 7 year old son, we went through preimplantation genetic diagnosis, so we would not have a child with CF. We were shocked when our son's newborn screening was positive for CF. We later found out there was an error with the genetic testing. I cried so much in the first 6 months. The only thing that made me feel better was my husband telling me that getting an early diagnosis got our son off to a great start.
Fast forward 7 years and for the most part, our lives are pretty normal. Our 7 year old does anywhere from 1-3 hours of treatment a day (3 hours when he has an infection). He is a normal weight and height (although he eats a ton just to maintain a normal weight). He has been in the hospital twice, once for a lung infection and once for an intestinal issue related to the CF.
Our son, has a few more appointments then a typical kid and a cold will typically knock him down for 3-5 days of school, whereas our other son, won't miss any for the same thing.
This is all a part of our daily routine now. Our son is in little league and cub scouts. He has lots of friends and is well adjusted. He goes to sleepovers and to camp. The only noticeable difference between he and the other kids, is that he stops to take pills before he eats. BTW, it is very impressive to his 7 year old friends that he pops a bunch of pills in his month and swallows them.
Take it one day at a time, you will still have a baby who you love and will have a very fulfilling life. CF severity varies widely between people. The treatments for the disease have improved drastically.
Fast forward 7 years and for the most part, our lives are pretty normal. Our 7 year old does anywhere from 1-3 hours of treatment a day (3 hours when he has an infection). He is a normal weight and height (although he eats a ton just to maintain a normal weight). He has been in the hospital twice, once for a lung infection and once for an intestinal issue related to the CF.
Our son, has a few more appointments then a typical kid and a cold will typically knock him down for 3-5 days of school, whereas our other son, won't miss any for the same thing.
This is all a part of our daily routine now. Our son is in little league and cub scouts. He has lots of friends and is well adjusted. He goes to sleepovers and to camp. The only noticeable difference between he and the other kids, is that he stops to take pills before he eats. BTW, it is very impressive to his 7 year old friends that he pops a bunch of pills in his month and swallows them.
Take it one day at a time, you will still have a baby who you love and will have a very fulfilling life. CF severity varies widely between people. The treatments for the disease have improved drastically.
I am 37 years old and I told my doctor I planned to live to 90. I am married, have two wonderful children, two master's degrees, a job I love, and I enjoy traveling the world. Knowing your child has CF at such an early age means your child will benefit from the latest research and proactive care. Grieving is very normal and you have come to a great place for support.
HOLY SH--. Your child's life expectancy is NOT minimal. I am 74. I was a lifeguard on an Atlantic Ocean beach for five years. I played varsity basketball in college (not well though). I am College educated. I have been married for 52 years. This site is full with CF Patients over 50 years of age.
Cystic Fibrosis is not a death sentence!!!!!
Bill
Cystic Fibrosis is not a death sentence!!!!!
Bill
Aboveallislove
Super Moderator
Dear mom, my stories is nearly identical. 41. Only child. Told we couldn't have children. I know the anguish. It will get better. It won't ever go away...but it will get better. And I firmly believe in ten years there will be a pill that makes cf a totally different type of disease. Also, what classes are the mutations. There is one drug already approved for one mutation and in the works for others. Beyond prayer keeping up with the science and research helps keep me going when the anguish kicks in. Hugs and prayers
Hi. I know how you are feeling right now. I had my daughter a month away from my 32nd birthday. She was not diagnosed until she was 11. The pain and anguish we went through was all-consuming. It is but a memory now. She is 24 years old and besides a few treatments (vest/pulmozyme/cayston and others off & on) she is fine and happy. Do not let this diagnosis change your life. Accept it and do the things you need to do......... but continue living! Sending good thoughts your way!
I also was told I better try to have kids soon - at 35 years old. So soon after marriage - we started trying right away - got pregnant within a couple of months. I was tested as a non-carrier in pre-natal testing - so my husband was not tested. Come to find out - our Son was born with CF anyway - no family history either - on either side. You never know what life will bring - all you can do is try to enjoy every moment. Our Son also later was diagnosed with Autism. Each one of these incurable diseases is very difficult to bear as a parent - but all we can do is try to show our child as much love as we possibly can. So far - for my son - the CF is really under control - he is going to be 9 years old - no major lung issues - and the enzymes totally control his digestive issues. He is basically a pretty happy kid-and because of the Autism - does not know he has Autism or CF - so - he just ...lives....
There are so many great examples of people living full lives with CF - please - if you can - check out the story of Boomer Esaison's son Gunnar - on HBO's Real Sports. To me - that story was very inspiring. Life expectancy is NOT minimal if you do the treatments the doctors recommend. I recommend going to that chapter 2 hours away - they have the best treatment protocols - you will only have to see those doctors minimum of 4 times a year.
Treatments are not that bad - they seem so at first - but then they just become part of your normal routine.
No matter what is in store for you - you can handle it. It's work - but so is just being a parent to a kid with no diseases so - please - don't be afraid...you can do it!
There are so many great examples of people living full lives with CF - please - if you can - check out the story of Boomer Esaison's son Gunnar - on HBO's Real Sports. To me - that story was very inspiring. Life expectancy is NOT minimal if you do the treatments the doctors recommend. I recommend going to that chapter 2 hours away - they have the best treatment protocols - you will only have to see those doctors minimum of 4 times a year.
Treatments are not that bad - they seem so at first - but then they just become part of your normal routine.
No matter what is in store for you - you can handle it. It's work - but so is just being a parent to a kid with no diseases so - please - don't be afraid...you can do it!
F
faithstewart
Guest
If you don't mind my asking, which one is the one with only one other in the data base? Both of my girls have a very common mutation along with one that only has one other in the data base...so just curious I don't think we are in the data base, lol.
I don't think we are in the data base, lol.
F
faithstewart
Guest
I didn't mean to hit reply with quote...I meant that for the original poster...sorry!
rosesixtyfive
New member
Hi, your life with your child is going to be everything you hoped it would be. One day, soon, you'll be doing normal things like birthday parties, slumber parties, trips to Disneyland. It just doesn't feel like it now because it is a lot to take in all it once. We can fight this disease now. This forum is filled with people who are 30-40-50 plus years old who fought the disease without the right weapons. Think of how little they understood in 1973 when we were kids, but they are coming up with medicines that correct the genetic defect plus medicines that make life more normal for our children. You can do this. Your down so low right now...but someday soon, you'll be on the other side, and your joy will be deeper because of what you have survived.
rosesixtyfive, mother of Sam, ddf508, 4 years old
rosesixtyfive, mother of Sam, ddf508, 4 years old
H
hll124
Guest
I remember the day we found out our daughter had CF….she was 5 weeks old. I felt like you, that our world had fallen apart. THEN I saw our other friends, with babies around the same age, give or take a month. We thought we had "problems" but were we wrong! These "healthy" babies were sick with croup at night, had ear infections or whatever else goes wrong with new borns. Our daughter, other than not putting on weight easily, was the healthiest baby we knew!!!
Our first hospital stay was when she turned 6 (she had her birthday in hospital that year). She's been in and out once or twice a year, as she's only got "mild" CF. She's just turned 17 and is one of the happiest, healthiest kids we know.
We now have a son, who is almost 11 - non-CF. Since he has been born we've travelled - England, America and my daughter even spent 2 weeks in Nepal on a school trip. FYI - we're in Australia. We've also been on a couple of cruises, so as you can see, we've not let her disability stop us from enjoying lots of family time together. As our doctor has always told us, there always has to be a quality of life in amongst all the requirements that CF has.
Once the shell shock has passed, you'll see your lovely baby for what she is, a joy in your lives! Just take it one day at a time and ENOY!
Our first hospital stay was when she turned 6 (she had her birthday in hospital that year). She's been in and out once or twice a year, as she's only got "mild" CF. She's just turned 17 and is one of the happiest, healthiest kids we know.
We now have a son, who is almost 11 - non-CF. Since he has been born we've travelled - England, America and my daughter even spent 2 weeks in Nepal on a school trip. FYI - we're in Australia. We've also been on a couple of cruises, so as you can see, we've not let her disability stop us from enjoying lots of family time together. As our doctor has always told us, there always has to be a quality of life in amongst all the requirements that CF has.
Once the shell shock has passed, you'll see your lovely baby for what she is, a joy in your lives! Just take it one day at a time and ENOY!
Hi, I'm 36 years old and have CF. I was diagnosed at age 34 while enlisted in the Marine Corps. I'm happily married and the wife and I are trying to save up for IVF one day. Just like many others on the forum have already said, keep your chin up! Having CF doesn't mean your child can't live a life full of joy, just like anyone else.
Timothy468
New member
Here is what I have learned from caring for kids with CF.
You are probably going to feel like your child is broken, and not much that we can say will change that feeling. But time and experience will lead you to a new place.
With time, you will come to see that your child has a "disease" (CF), but is a healthy child. And, there are a lot of of people we see every day without any diagnosed disease and yet they are not at all healthy.
It is my experience that words help only a little, but time will teach you what others here already know - that you will have a child like everyone else, and your dreams may come true after all.
You are probably going to feel like your child is broken, and not much that we can say will change that feeling. But time and experience will lead you to a new place.
With time, you will come to see that your child has a "disease" (CF), but is a healthy child. And, there are a lot of of people we see every day without any diagnosed disease and yet they are not at all healthy.
It is my experience that words help only a little, but time will teach you what others here already know - that you will have a child like everyone else, and your dreams may come true after all.
I am still trying to understand these mutations 551_555delTTTCC and R1066C (c.3196C). Is there a site to go to that explains these mutations. Our Doctor tries to explain but it is so overwhelming when we are there and I try not to become to emotional. I would like to find somewhere i could read and maybe understand them a little more.
The hardest days are when she starts to cough and wheeze and it breaks my heart. In a positive note she is happy and very curious!
Thank you all! Becoming strong!
The hardest days are when she starts to cough and wheeze and it breaks my heart. In a positive note she is happy and very curious!
Thank you all! Becoming strong!
People go to College and Grad School to try and understand these mutations. It is overwhelming for all of us. My advice is to forget about the "mutations" and deal with (and enjoy) your child one day at a time. My second mutation has been found with 5 families in Northern Ireland. My family has been out of Northern Ireland since 1820.
Bill
Bill
Don't focus on the mutations, instead focus on your child. I have friends with kids who have the same mutations as my child and despite being about the same age all have varied symptoms. Most of us do at least 2-3 vest cpt treatments a day. Some like mine have more digestive issues, other have sinus problems, others have coughs. Sometimes there's no rhyme or reason in the variety of symptoms -- luck of the draw. Learn cpt to keep her lungs healthy. Take it one step at a time.
I'm 51, made it thru college, worked my whole adult life, been married 25 yrs, have 2 teenage daughters. I don't think I've missed much in life. CF throws a curve ball every once in a while but that's life. Many of my friends are facing their own health issues too. As others have said, over time you will get into a routine that's manageable.