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ronnie i am 21 i have cf and all my life i was told im dying give up all the negative stuff on top of that my mom was in lighter words insane honestly unfit to raise me and know im happy to report i went from living with her being 80 lbs and 40% lung function to being with my now husband and i went to 122lbs and 72% function im very happy but heres the problem my doctor isnt happy she actullay is mad im not better and my husband and i want to have children and she sat there in front of me in clinic and told me i was dying and i shouldnt bring a child in to this world with a dying mother and told me if i did get prego i should terminate if it had cf but thats like my mother terminating me and you you know what should i do i know i need my doctors on my side to go through a pregnacy it says so on all the websites and that it is possible and it could be healthy and all that should i try and find another cf doctor report her for paiteint doctor abuse if so how i live in houston texas there are no other cf adult care doctors but her in my area i know your a guy but i really need help i have just learned in the last year all about my illness for my self lost my medicaide lost ssi everything cause of my mom and she never told me anything about my illness so im really just now learning about it and i have no clue about anything out there to help my husband and i with any problems we have such as prescripton cost doctor rights anything i really need help from my cf community please feel free to contact me on here or by email shelby87a@hotmail.com and if you need other people opion feel free to post this i need all the help i can get from anyone who can give it thank youI'm sure that she would love to hear from some of you cysters out there who have babies of your own. It sounds like she is very interested in carrying a child, but seems a little uncertain about bringing a child into this world without being able to guarantee it a "normal" upbringing. What would you guys say to her? I'm sure any feedback would be much appreciated.
Saturday, November 7, 2009
Should CF Women Have Babies?
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Carrie · 804 weeks ago
I got pregnant, had a successful pregnancy and delivered a healthy baby. I have a great husband who is helpful when I am having a bad health day... and other family members who are happy to help out as well. Having a child helped me feel "normal". My son knows about my illness and my limitations. My son is the light of my life-- he is all the encouragement that I need to do my treatments and my medications.
I think my son has a fairly normal upbringing. We go to the zoo, museums, play soccer in the backyard and build Legos. The only difference in his life is we do homeschool and don't have alot of playdates due to germs.
Piper · 804 weeks ago
Basically most CF docs won't recommend carrying a child if your lung function is below 50% (40% is often considered the absolute "cut off", but of course some people carry children despite low lung function). The thing to remember, though, is that lung function is only part of the picture. Carrying a child is often hard on a CF body, and raising an infant often is as well. I think it's EXTREMELY important for CF women (and men!) considering having kids to examine all aspects of their physical and emotional health to make sure that they're ready for the challenge.
I would ask your doctor flat out why she thinks you're not "healthy enough" to have a child. Is it based on lung function? Weight? Infection history? Once you have a clearer answer, you can focus on working through that particular challenge (for example, if it's a weight issue, you might want a g-tube for a few months to help stabilize your nutrition). It may be that she just wants you to demonstrate that you can STAY up in the higher numbers for a while -- since you've made such an incredible jump in a year, it might be wise to give your body time to adjust and show that you can maintain that level of health for a few months. In the meantime, I would get serious about health, compliance, and exercise if you aren't already. When a baby comes into your life it's going to be more challenging than ever to keep up with your CF routine, and you need to have a good head start and good habits already formed. At 21 you still have TONS of time to be thinking about starting a family, and if waiting 6 months or a year gets you to even better levels of health that you can sustain even longer throughout your child's life, it will be SOOOO worth it.
Children raised by CFers can have happy, normal childhoods. It's ridiculous to claim that people living with chronic illness can't or "shouldn't" raise children. I know one CFer is also the mother of a CFer, and both mom and baby are happy and staying healthy. Your focus here should be on YOUR health, which in turn will help to guarantee the best possible health and outcome for your child.
Good luck!
Heather MacInnis · 804 weeks ago
I think also that if you can come back from a tough upbringing and bad health like you have, then you can do almost anything. I would agree with the comment above though that maybe investing a little more time in You might be a good idea...for you, your husband and any future children. I also agree that you will definitely need a good support system in place because at 72% lung function a baby might not be too bad but a toddler would be exhausting. I think at the end of the day tho people with CF can do most of the things that other people do, just differently and with help but many other people with different conditions and disabilities are in the same boat. Anyway, I doubt that this has been any help but I really wanted to comment and let you know that people care. Best of luck in whatever you decide to do :)
Christie Rodecap · 804 weeks ago
I am 52 years young. I have a beautiful 32 year old son that I adore and a husband that adores me (I think) These 2 men in my life give me a reason for living. I also have CF. When I became pregnant I didn't know I had cf, I wasn't diagnosed until I was 43. I DID have a difficult pregnancy (diabetes, edema, septicemia) but those were not my main problem and neither were my lungs. I had a broken pelvic bone that prevented me from having a natural childbirth and was not diagnosed till 4 hours before a c-section. If your doctor is objecting because she thinks you won't be around to raise this child then she best think again. Alot of cf woman have children and see them grown. This is also selfish to not allow any couple who can have children. What is to say that parents are hit by a bus and killed??? We are all going to die someday. If you are healthy enough to carry a child and you want a child, Have a child, you will never regret it. I had a mother that told us just about every chance she got that she "never wanted you little bastards" I broke that cycle...An abused child CAN become a loving parent....
Cheryl · 804 weeks ago
@janie_love · 804 weeks ago
On the other hand some people are hardly affected by their CF. I have another friend who was so lightly affected by it her parents were able to keep it from her until she was a teenager(which I think is wrong to not tell your child but the point is she couldn't even tell anything was wrong with her). Another example is this girl who I found in the blog world, http://cfandmotherhood.blogspot.com/ She doesn't seem to have CF as severely and wasn't even diagnosed until she was 6. She had a baby and is still doing great!
I think if you have it as severe as my BF its not a good idea to try at all. I don't even think my friend would make it through the pregnancy herself if she had a baby at this point in her life. But if you think you are healthy enough and you want a baby badly enough to fight for it then I think you should go for it! Really you are the best judge or your health and your will. but I hope this helped a little! GOOD LUCK!!!
Piper · 804 weeks ago
http://www.cfroundtable.com/winter4.htm
Denise · 804 weeks ago
Misha · 804 weeks ago
Sandy · 804 weeks ago
emily · 803 weeks ago
I was diagnosed with CF at age 7 months. At age 23 I became pregnant with a lung function of 44%. The pregnancy was difficult (diabetes, decreased lung function, etc) but I worked VERY hard - exercised, did ALL of my treatments and meds - and had a beautiful baby girl. They had to deliver her 6 weeks early b/c my lungs were too compressed by her, and I had a C-section b/c she was breach. My husband was tested and is NOT a carrier of CF, so we knew she would only be a carrier from me and not actually have CF. (I highly recommend testing your spouse if you have CF so you can better prepare and make decisions) At age 26, I had a double lung transplant. Thankfully, I had many family take turns taking care of her (she was 3 at the time of my Tx) during my hospital stay, and for several months after returning home. Since my Tx I can FINALLY be a Mommy to her.. I'M the one who bathes her, feeds her, runs with her, takes her to the park and the zoo, tosses her in the air (which is not an easy task for ANYONE since she weighed a healthy 50 pounds when she turned 4!!).... She is the light of my life and is actually my greatest helper and advocate. SHE reminds me to do all my treatments, to wear a mask when we're in a crowded place. She checks my blood sugars and helps me give shots and take meds. She is THE most mature and empathetic 4 year old on the planet, and I believe that having CF has blessed MY life AND her life.. as well as my husband and all of our family members who have experienced a renewed faith after seeing us overcome our obstacles TOGETHER!!
Mine is only one story, and of course, everyone has different circumstances. I wish you the best in making this decision, but I encourage you to seek another doctor if, in fact, she is not being objective and helpful. I travel 100 miles to my Tx Clinic.. I know that is where I receive the best possible care, so I drive the 2 hours there and back and it is WELL worth it.
God Bless you and DON'T GIVE UP!! We may not have the longest life or the easiest life, but it sure can be paradise!!!!!
-your fellow Cysta, emily
Kristen · 803 weeks ago
And, FWIW, I have CF and made the decision to get pregnant and am currently 12 weeks pregnant.
Good luck with your decision! And congrats on such a great increase in PFTs!
Summer · 803 weeks ago
michelle · 803 weeks ago
Jill · 790 weeks ago