Patient Wisdom

Patient Wisdom

Question 5: Given the potential for passing on your genetic condition, what consideration have you given towards having children?


Factoid: In addition to helping develop a screening and treatment protocol, genetic counselors can be a great resource for family planning considerations. Read more about genetic counseling.

My husband and I were told we needed [PGD]-IVF and received counseling with a genetic counsellor. We decided to have regular IVF instead of the genetic type as we knew our child could deal with this condition if needed (if they got it). If we'd ‘picked' the genes (embryos) and our child didn't get FAP, he/she could inherit a much worse disease…you can't control nature. - Ruth


Though I am only 19, I have already decided that I am not going to have my own children. Instead I am going to adopt. I can’t justify passing on this condition and all it comes with. I would forever feel guilty and responsible. - anonymous


I will have children. FAP is not a life sentence and there are other things that can be passed on, too. If we all stop having children due to passing something on, most people wouldn't be here. - Kari


Hysterectomy. It stops with me, in my immediate family, as far as I am concerned. - Kelly Livingston


The possibility of passing F.A.P. on, in conjunction with the risk of desmoid tumors following pregnancy, forced me to ultimately conclude that I could not biologically have children. However, for those women not predisposed to desmoids…I think having biological children is still very feasible with the help of IVF and embryo screening. - Dakota


My husband and I spent much time considering options to conceive. We were open to PGD to remove chances of passing on my condition, however I unfortunately have tested negative for all [known] polyposis conditions. Without a [known] mutation, Preimplantation Genetic Diagnosis (PGD) cannot be done. Although I understand PGD is against many belief systems, I would 100% do it if I could. - Brooke Porretti


As I was diagnosed at the time we were trying to get pregnant, we stopped trying and just decided to have fun! [We] didn’t want to pass this disease on. And, I was fortunate as I married a wonderful man who graced me with 3 son's from his previous marriages. - Betty Starr


This has been in my family for many generations and we were ready to accept the 50% chance. However, thanks to this condition, I am infertile and our options we're left with are [PGD]-IVF or adoption - the consideration for preimplantation genetic diagnosis would be reasonable. It's a personal choice as we each have unique experiences with this condition. - Anonymous


Sometimes, I have thought about what if my kids have it…do I want this for them? In the end, no matter what happens, I would still want children. If I overcame it and they had it, I would support them every step of the way. - Samia Jouni


I will most likely adopt and/or foster. I have been told already that, if i have children, the embryos can be tested first before implanting them. I know I will adopt most likely as I want this condition to end with me. - Claire McIntosh


I am unable to have children due to this condition. I've had a radical hysterectomy and BSO (Bilateral Salphingo-Oophorectomy). My sister is Lynch positive and already has a daughter. She does not plan to have more children. - Emily Wilson


My wife and I decided that we would not give up the joy of having and raising children because of Gardner's. As it is a 50/50 proposition, one of our two daughters has Gardner’s, recently had IRA surgery and, I have no doubt, will live a full life without limitation. - Ed Minor 


I would have them, and not think twice about it, because I have seen how my sisters have done, They all went on to have children; some have inherited it and some haven’t. They live normal lives, so I think, “Where would we be without them?” and “What if my dad had never had kids?” - Melanie Hirschi


Tough question - no easy answer. I had my children prior to my diagnosis and, just recently, a nurse asked me why I had children if I knew I had this. Honestly, I don't think it would have changed my mind. I am blessed with my children and can't imagine my life without them, FAP or not. Now, do I wish my daughter didn't have this?…Of course! - Michelle Sutter


I have no children and will not have any. FAP ends with me. - Anonymous


I’ve considered it. I really go back and forth about it from time to time. I know that if I do have children, I will love them unconditionally and, if they do inherit my disease, I will do everything to be proactive for their care. - Charlie Henricks


I already had kids when I was diagnosed. But that didn't stop me. I've had two more since. The challenge is making sure they are screened periodically. Theron Perkins


As I told my children, if I had known, I would not have had children.  Yet, I could not have better children than I have been given.  One has FAP and the other does not. I now have one grandson with it. I hope it can be erradicated before he has to give thought to it. Sandra Redlands


I have 4 kids. They have high chance of getting [it]. I did some testing. My kids have to wait until late teens. So I guess we [will] see. - Anonymous


This decision was hard, so I'm kinda glad circumstance decided for me. No longer able to have children, because I received chemo that affected my eggs. We are planning to adopt in the future. - Morgan


I would have children anyway. I would encourage my children to have children. Even if we didn't have FAP, we can not guarantee that our children will not have genetic dispositions toward certain diseases. A child is a precious gift and I would not deny myself or my children the honor of having one. - Tammy


I had my daughter before I found out I had a genetic condition. I was adopted and had no medical history. She was 9 months [old] when I got my diagnosis. I just pray that she doesn't have it. - Whitley Buckles


I had kids before I knew I had FAP and after my diagnosis. I was terrified I had passed it onto them. Luckily, they are both negative. I can't  say what I would have done if it had been the other way around. I can't imagine life without my son, but if I had given him FAP, I can't imagine the guilt. - Kathryn Howard


I'm 27 and at the moment I think I will not have children. - Maria Teresa Castellini


I was diagnosed late, age 52, so I already had my children. -  Suzanne Pilon



Click HERE to return to Patient Wisdom Survey Questions