If you or someone you know has Cystic Fibrosis, what is something you would say to a mom with a newborn that may have it? We are just awaiting further test results. Google is scary, the doctor’s words are scary, I just need some light.
My niece has cystic fibrosis. She’s 24 yrs old. A college graduate and new bride. This is not a death sentence. My niece lives a full life. Here she is with her dad, my brother on her wedding day. She’s a strong beautiful woman.
I have two children with Cystic Fibrosis. They are 36 and 20. I would say stay consistent with meds and treatments but don’t let it run your life. Live you life as normal as possible. My kids did everything their healthy friends did. I never held them back from the things they wanted to do. For you it is always good to have someone you can talk to.
Encourage breastfeeding. The symptoms come on later.
They thought my son had it when he was a baby but they later diagnosed it as asthma
First question is why do you think they may have cystic fibrosis? And what additional tests are they doing? My biggest advice is do not count on the pediatrician for information you want to speak to a CF doctor Who specializes in cf.
There are many forms with many different symptoms. And having a great connection with your CF doctor makes a world of difference
Remember they are babies first. Diagnosis second. They need what every other baby needs. Don’t let the diagnosis run your life. My girl doesn’t had cf but Down syndrome. I wish someone had told me this before I got so stress with the diagnosis and I didn’t get to really enjoy her first couple years.
My daughter had to get tested for it because her newborn screening came back abnormal for it they did a sweat test on her and it came back that she just carrier of it… Just think positive and stay strong…
They’re allowed to mourn the life they thought their child would if had. That’s okay.
I don’t know if words really help. It’s being there for your friend that they will remember. No matter the outcome. I don’t remember words said to me, I remember my friends and family that have stayed by my side when it becomes too much to face alone. Listen, be supportive and learn
Going through this myself. He’s not here yet but both me and his dad are carriers. Hugs to you mama. It is definitely hard.
These comments are giving me life so happy to see some kids still had a “normal” life with it.
I would say take it one day at a time momma. Do your very best and give your baby the best quality of life possible. It gets hard but always keep your head up. Never give up and never back down. Stand for your child because you are their advocate. Cry when you need to. Pray daily. And never let anyone tell you you’re not a rockstar because you are!
I would tell them alot off what I learned of the disease was from an episode of call the midwife that was very inspiring. You can look it up and try it
My oldest daughter (11 years old) has it. There’s a WIDE range of symptom severity. Don’t panic (I know easier said than done). Take it one day at a time. Know that there is a ton of support out here. They’ve also made major advancements in treatments. Many doctors who aren’t use to dealing with CF tend to give VERY outdated information. If you have any questions, please feel free to message me!!
Find a CF Team first and for most find a childrens hospital with a CF Team. Not any hospital has CF Teams only some and big ones.
Everything will be alright with medication we can live very good happy productive lives.
The diagnosis does not define your child. I have two special needs children and they are strong, unique, warriors. They conquer all. Don’t let the diagnosis definw the child
First i wanna say be strong its gonna be ok. My cousin is 6 and was born with it. When we first found out everyone freaked out. Its going to be tough itll be more emotionally draining if you think about the negatives all the time. Let me tell you even with the vibrating vest, breathing treatments, drs visits this kid could never be more vibrant and happy. Hes more intelligent than half of the older kids in my family. Take it one day at a time and live in the moment. Dont focus on the future and the what ifs and how longs. My aunt let this kid live in a bubble afraid his immune system was too weak and now he wont leave the house because they have him afraid. Please let your baby go out and experience things. Take precaution but dont bubble him in. Its not as scary to them as it is us because it becomes their “normal”. Them babies are stronger than we think. I helped raise him and have seen it every step of the way. If you need anything to talk, ask questions please pm me. I know how my aunt felt before we sat down and talked to other people we knew whos kids had it and it really helps. You got this!
Give that lady a hug! She is balancing being a new mom plus being a mom of a child with health issues! She needs support…make her dinner or clean her house…she isn’t ready to hear life expectancy, dependency or Wikipedia facts from her friends. Bring wine and comfort and friendship!