Posted 10/30/2012 5:13 PM (GMT -6)
Hi, I don't know if you'll get this a month late, and I am not a mom or with CF myself, but I do know how you feel. I am also a carrier of CF, my grandmother lost all 5 of her siblings to the disease, the oldest making it to 16, and my cousin, who is now 22, has the disease. I have known for 10 years that I was a carrier, I got tested at 16 because of our family history. I used to say that I would never marry someone who is a carrier, but when you grow up and fall in love, things change. We have been married for 2 and a half years and still haven't gotten my husband tested. We are very careful not to get pregnant and I could never have an abortion. I am terrified that he is a carrier, and even if the test comes back negative, there is a huge part of me that just wants to do IVF and pre-implantation genetic diagnosis anyway because the test doesn't identify all of the types of CF; and of course over half his family has the arian blonde hair blue eyes so that doesn't help my concerns. But I'd feel so much more comfortable just being SURE that our kids won't have CF. He is much more positive/confident that everything will be fine and both he and my mom think it's totally unnecessary to do PGD if the test comes back negative. I am so afraid to have kids but couldn't imagine not having my own.
I have never wanted to put a child though what I have watched my cousin go though. There have been so many horrible points in her life, she has suffered more than I will ever know, been literally dying several times, and had two liver shunts and a transplant. She is now trying to get a lung and liver transplant, which she has been rejected for by one transplant team. She is in level 5 liver failure, and has been for over a year, things haven't been looking good. But just a few weeks ago she went from 20% to 51% lung capacity!!! She can breath again and her quality of life it much better. We don't know why, but she has been full of miracles like this throughout her life; returned to us from certain death.
She writes the most incredible blog, she it full of faith in God and zeal for life. She writes all the time that she is glad to be here, and that CF has made her who she is today. She's in college, has many amazing friends, has had boyfriends, and although she's constantly battling death, she lives an extremely full life. She is my hero, she is always putting on a brave face, didn't give up when told she wasn't a good canidate for a transplant, just started looking elsewhere, she is a champion! I say that I couldn't put a child though that, but I also couldn't imagine life without my cousin, none of us could.
What I do know, or believe, is that I AM NOT CAPABLE OF BEING THE MOTHER OF A CHILD WITH CF, not in the way my aunt has been. Her life has revolved around my cousin, she hasn't worked until a year ago because all of her time and energy has been devoted to keeping my cousin alive, to spending months at a time staying alone at the Ronald McDonald house across from the hospital in another state that can actually handle my cousin's health. She has had to quit and drop out of countless things at a moments notice to be there 100% for my cousin, knowing the whole time that she could die at any moment. I don't know how my aunt feels, I can't speak for her, but I know that I don't want that for my life and I don't think I could do it. It takes everything she has to support my cousin, she is an incredible person, and I don't think that most of us can measure up. She and my uncle also made the incredible brave decision to have another child, before PGD, knowing that he could have CF and deciding that what was mean to be would be and if he did have CF, that was God's plan for them. Thankfully he is healthy, CF free, and has grown into an amazing young man, clearly from the influence of his sister and parents. He even gave up a full ride at a top school to go to a college closer to home where he would have more opportunities to spend time with his sister; we just never know how long she has left.
I have no answers for myself, let alone you. My brother isn't a carrier, so being recessive you do have OK odds. But I would ask yourself very seriously, could you be a mom of a child with CF? Because if you make that choice, you better be ready to be the best mom on the planet, that's what a kid with CF needs to have a good life.
Best wishes, and whatever you do decide, that is your choice and not for others to judge.
It’s not perfect, but it’s good enough.