Carrier of Cystic Fibrosis

We have a family friend who is about 25. She has Cystic Fibrosis. She cheered in HS and has led a very active life. She just got married a couple years ago. It isn't the worst that could happen. I know you want a 100% healthy baby, but he/she can still lead a normal life with it.

My girlfriend was a carrier of CF and she had 4 very healthy, very active boys. Try not to worry, I know that is easier said than done.

Hi M.,

My 8 yr old niece has CF and we found out when she was 2. No one in my family had ever even heard of CF until Makailyn was diagnosed. I will be honest, she has had a rough life and it is a horrible disease but there are new medicines and treatments every day the doctors are coming up with that is helping with prolonging the lives of CF patients.

With CF, a person can look so healthy on the outside yet be so sick on the inside. My niece is such a tough little girl you would never even know she's sick.

My best advice to you now is to NOT worry. Many people are unaware they are carriers and their children are born CF free. I am not a carrier however 3 of my sisters are yet only one of them has a child with CF. If your husband is not a carrier, than your baby has no chance of having the disease.
Again, CF is an awful disease BUT there are many ways to help a child with CF live a happy fulfiling life and many CF patients are living well into their 40's & 50's these days with all the new medicines so please stay hopeful and don't let yourself stress because you are a carrier.
This may not be the right forum to get info on CF either, my sister and mom regularly visit the CF forums to get advice and there are many posotive encouraging people there that know what you are going through.

But honsetly, I would stay off the internet for now and don't read into cystic fibrosis information just yet, it will only worry and panic you more and your baby doesn't need you stressed. Stay calm and when you find out your hubbys results you can go from there.

http://www.cysticfibrosis.com/forums/
http://cyticfibrosis.com

You are in my prayers and I wish you the best. I would love to be updated on your husbands CF results.
Take care!!

M.,
When I was pregant, I was 40, and a blood test showed
a very high possibility for Down's Syndrome. I was 25
weeks pregnant and the doctor, for over two hours, tried
to convince me I should abort the baby.

When I decided to become pregnant, I wanted a child, to
love, to nurture, to care for, to help become the person
they were intended to be. I had decided prior to pregnancy
that God was in charge, not me, and no matter what illnesses, or disabilities that I had to encounter with
the new child, I would be there for my child, through it
all, and teach my child that God was there too.

My child is now 15, the joy of my life, and has not always
been healthy, but has always been a blessing. He loves life, and people, and God, and me. He did not have Down's
Syndrome, but was diagnosed later with dyslexia. He has
struggled to read and write, but has always done well in all of his studies. Two more years, and he will graduate
from High School.

Every parent has to decide, with any pregnancy, what is
their goal for being a parent to any child. There are no
guarantees in life. We go through life, not around it.
I pray you and your husband make whatever decision that
you both feel comfortable with, and know that there is a
bigger decision maker than us....the life giver, and creator..God.

Wishing you blessings.
Becky

Hi M.,
Your situation sounds very familiar ;)
When I was pregnant with my now two year old I to was told I was a carrier of cystic fibrosis of which I was completley unaware of and my mother for sure isn't a carrier and my father doesn't have any history in his family of being a carrier or having the disease. I know what you are going through and all that you are worrying about. It is good you are having your hubby tested just remember even if he is a carrier that doesn't automatically make a child with cystic fibrosis the outcome. I researched the disease and educated myself just in case and that helped to calm some of my worry. If you are looking at stats on the disease in the U.S. 1 in 4,000 children are born with CF... well anyways my daughter is a very healthy and happy two year old and I will pray that your outcome will be the same :)
~S.

I took the test when I was pregnant with our twins and felt just like you do! I had my husband tested and he wasn't a carrier and our twins are just fine. I wish I hadn't taken the darn test, that's for sure!

Don't worry about things you have no control over. Take good care of yourself and you give your baby the best chance of being born healthy.

Actually if you are a carrier and your husband is a carrier, you have a 25% chance of having a baby with CF. You have to have both genes to have the disease. Your husband, depending on his race, has about a 1 in 25-60 chance of being a carrier. I know it's scary, but the odds are in your favor that he will not be a carrier. He just needs to get tested. If he is positive, the only way to find out if the baby has CF is through an amniocentesis. Good luck!

J. Snead

The odds of your husband being a carrier are SO slim that you shouldn't even be worrying about a 50% chance. Do not work yourself up. Just calm down until you have him tested and then you will be relieved thathe isn't a carrier too. If by chance he is and if by some slim chance your child has it, you will love the child just the same and the child will mean the world to you and that is all that matters! Just be thrilled that you are having a baby and focus on the excitment of having a baby!

M.,

Here is something you're missing. There is also a 50% chance that the baby will not have it. Do not worry about tomorrow, for tomorrow will take care of itself. Stay positive and eat well. Take the other side of the coin and be positive. God bless you.

Hi M.,

Congratulations on your marriage and baby on the way, so so exciting! I found out with my first pregnancy that I was a CF carrier, my husband was actually tested the day the drs. office found out I was a carrier. He just ran to their office and they did a blood test. Perhaps your dr. could let your husband come be tested sooner, just to ease your mind. My husband is not a carrier.

The advice you received from Johnathan Sneed is correct there is only a 25% chance the baby will be effected if you and your husband are both carriers, not a 50% chance.

Hope this helps. Take care of yourself and best wishes on becoming a new parent, so wonderful!

My only advice is even if you're husband is not a carrier you should have any of your children tested to make sure they are not carriers just so they know when they decide to become parents what the risks are in who they choose as mates. I am not a carrier but I went ahead and made my husband get tested so that we would know if our child could possibly become a carrier. Hope this makes sense.

Try try try not to worry --- your baby will feel it and it's not good for either one of you!!! I don't have any experience with CF, but I wanted you to know you guys will be in my prayers, I wish you the best for your appointment next week.

Take the test and educate yourself. My 17 year old nephew has CF and it is a hard life. I think one of the hardest parts is that he doesn't "Get" how sick he is and that he has to continually do the treatments. SKipping a treatment threatens his life. I also have a 19 year old nephew who is fine. But, that causees grief too - because he has had a sick brother his whole life. It's just very h*** o* the whole family.

But, as someone said, there are tons of new treatments that are doing wonders. I have even heard of lung transplants for CF children that extend life.

-L.

Well, this is part of life. First, he has to get tested. If he is positive, then go from there. You said you had a 50% chance the baby will be fine if your husband is positive. Well, I don't know if they can do an amnio to test for this, but if your doctor says to get one, do it. I did when I was pregnant, it is no big deal. Hope for the best, prepare for the worst.

Hi M.,

Prayer is always the best way to get through it, do not dicouraged, just take care of your self and try to say stron mentally. There is a safe nutritional supplements I know so many mom to be take during pregnancy that will be of great help to you. Let me know and I will share more details.

I will keep you and your babay in my prayers.

A.

Congratulations on becoming parents and the possibility of being gifted with a special needs child. You will be very loving and care for him/her just like any other baby gift from God. Be prepared though, because this baby may be healthy and strong-doctors never know for sure. Read, become educated and prepare for the joy of your life. There are no dissapointments with God-He never makes a mistake and loves you and this baby more than you ever could. I am praying for you!

M., my sister is a carrier for cf and I have a 25yr old nephew and a 8yr old niece both with cf. I have a nephew between these two that does not have cf. the advancements they have now are amazing! My nephew wasn't suppose to live past 13. God will only give you what you can handle and you will love that baby no matter what. Best wishes!!