FAP and options for having children

[TaylsN]

Hi, I was wondering if anyone has any knowledge or experience with FAP and having children. My boyfriend was recently diagnosed with this genetic disorder and he has a 50% chance of passing it on to children. There is the option of IVF, but being that there's nothing wrong with me I'd prefer not to have to take all those drugs. I was wondering if anyone knew of other options, maybe some sort of sperm screening? I'd appreciate any advice or even references to others who might be able to help. Thanks

[ElizabethClare]

Hi :-)
I am 24 and was diagnosed with FAP at a young age. My father has is, his brother, and their father too.

Just a quick reply really, I was told by Prof Morton (my surgeon) that if I wanted to have anymore children AND wanted to make sure that they didn't have the faulty gene- We could have a "test tube" baby.

The Prof said that they are now able to pinpoint which of my eggs are holding the FAP gene and which are not.

If I were you, I would speak to your consultant or whichever doctor that you are under and query it.

Hope that I helped a little, and good luck with everything :-)

Liz

[Candie26Naber]

My name is Candie and I am 26. I Have FAP. My Father has it, My Older brother has it(half siblings) and my grandmother had it. My Fathers brother and sister do not have it, Their Children also do not have it. I just went through my Proctolceolectomy(May 1st) to remove my colon and have the creation of a j-pouch.  I also have PCOS. Prior to knowing I was diagnosed I went through 2 treatments of IVF, both of which failed.  I too have been trying to decided if I wanted to have children because of this condition...

While my heart breaks and goes out to mammo, I dont think her story is a typical FAP senerio. All of my family members who have had FAP and the surgery to treat it have lived very long and happy lives. They have all had children and some seem to get the un-lucky straw. While no one would wish for a sick child and want a child to have surgery, the technological advances in todays society have come so far. My father has a permentant ileostomy bag and does things I couldnt imagine. He has lived a compleltly normal(for our family, lol!) life. My brother has a j-pouch and also does typical behaviors. He has a daughter who is 12 and just got her first scope(colon and endo) and so far(knock on wood) has no signs of FAP.

I just having had the surgery have a temp ileostomy right now and had a great check up and CT scan with my surgeron yesterday. I am hoping for take down within the next month.

I realized as I was "googling" for  similar reasons to your post that if I had had the baby prior to being diagnosed it wouldn't have mattered in my decision making process to go through IVF or not. and while I will pray for a health baby...I cannot play God in this situation and whatever he has planned for us is fine with me. We will face whatever we need to face as a family.

I hope you don't let the scary and heart breaking stories of FAP scare you...there can also be happy endings. I wish you the best of luck and sticky baby dust with whatever you decide to do...best of luck to everyone and Mammo...you and your family, in heaven and on earth will be in my prayers tonight

[EnjoySerenity]

35 years ago my husband was diagnosed with colon-rectal cancer (malignant polyps) after a two day episode of light rectal bleeding, he was 21 at the time. He was in fantastic health, no digestive issues whatsoever. He had a temporary colostomy and then reconnection surgery.We were told all is well, no worries. 4 years later, the polyps returned at the suture site and he had to have a permanent ileostomy (he wears a bag). Between the first surgery and the second we had 3 children and I was pregnant with the fourth when he had surgery. At that time the doctor told us what he had was FAP and that if we were wise, we'd save the baby I was carrying a world of misery if I just aborted it! What a horrible thing to say to a pregnant woman . . . or so I thought.

A few years down the road we learned that all our children had FAP, including the baby I was carrying at that time. They were all diagnosed through genetic screening. They have all had ileostomies and all now wear bags. The children as well as my husband have all suffered with long bone tumors, desmoid tumors, calcium stones in the gallbladder and kidneys. They've had stones in tear ducts, and saliva glands. They have polyps removed from the esophagus and duodenal on a routine basis (every 6 months).

My husband and oldest daughter have both had whipple procedures done and my husband can no longer ingest any food. He is on total parental nutrition, tube feedings. He is living on borrowed time. We have been told that there is no stopping the progression of FAP, that it is an ongoing/lifelong disease that will eventually take all their lives.

I love each and every one of my children more then life itself; but if I knew then what I know now . . . I would not have brought children into this world who must suffer with this illness.

Today a woman can undergo amniocentesis to learn if a child she is carrying has FAP and then has options on what to do.

I would never suggest to anyone with FAP or a partner with FAP to have children who run a stronger then 50/50 chance of having FAP. It is a horrible illness for someone to be afflicted with.

[mammo]

I am extremely familiar with FAP and all the problems that go along with it.  I would think twice about having children.  I lost my children's father to it at 33 colon cancer, his brother @ 38 colon cancer.  My 3 children had to be scoped yearly, and when my youngest son was 12, he was diagnosed with FAP.  He had his colon removed, and is a healthy 38 today.  My eldest son was then diagnosed @ 16, had his colon removed, developed a Desmoid Tumor (caused by removal of the colon) and died at 31, leaving 2 little boys behind.  When my eldest grandson was 10 (1 year after watching his father suffer and die) he was diagnosed.  Like his father he had many problems, and 38 surgeries by the time he was 16!  He developed a 38lb Desmoid tumor which was removed, but he was dying.  Desmoids aren't malignant, but because of their tentacle like growing, they invade and crush major organs, and by the time you know one is present, it is too late.  Just ten days before he would have died, a set of 5 organs came thru for him.  He died 4 times while on the operating table, and developed Stage ll organ rejection. He had to remain in their tiny apartment for 1 year (fear of infection to the new organs) and could not eat anything by mouth for one year, he received his nourishment via TPN (intravenously) . In Nov. 08, he was doing very well, only had one more surgery to endure and this was to remove his ileostomy and colostomy bags. The doctor wanted to wait until after Thanksgiving to do his surgery so that my grandson could enjoy Thanksgiving dinner as he wasn't able to eat any the previous year.  My grandson called me at the end of November and was really down.  He said he was really missing his dad, and wished he were here to toss a football with him.  We talked for 40 minutes, making plans to go Christmas shopping the following week.  As we were hanging up he said "I love you grandma" and I replied "I love you too sweetie".  We never got to go shopping, just 3 days later, he started vomiting blood, both his bags filled with blood.  He was rushed to the hospital where he bled to death!  Unable to determine where and what caused the bleed, an autopsy was performed.  I have never wanted to know the results, as I cannot take hearing of any more of his suffering.  I want to remember his sweet smile and his last words to me, he was just 18.  He left behind a younger brother who still is unable to sleep in the bedroom he and his big brother shared, and still wakes his mom at night with his sobbing.  He knows he may endure what his dad and brother have.  My daughter is 37 and although she has not presented with any symptoms, no geneticist will say at 100% that she does not have the mutation.  She has a 2 year old son, who has to be tested every 3 months until age 5 for Hepatoblastoma (liver cancer), another problem with this disease.  Some babies are born with it and have little hope.  Although my son is 38, he could still face, brain or thyroid cancer, and must remain vigilant with his health.  My children had a 50% chance of getting the mutation so far 2 out of 3 got it.  My deceased son had 2 boys, one has died from it, and only time will tell with the other.  FAP is a hideous disease that causes so much pain and suffering, and I would not want to see any mother go thru what I have with this.  There is a website www.fapinfo.com and cancerkids.org which are both very helpful, although a lot of sad stories.  Please think long and hard on this, and feel free to email me at ***@**** if you would like to talk more.  I've been there, and have seen it all.  I attended a benefit for an 18 mo old little girl that was born with FAP and a Desmoid Tumor. Her mother felt a small bump on her back at 5 weeks while burping her, and although baby's spines tend to be bumpy, her mother told her not to worry.  But the mother couldn't ignore it, feeling something was wrong.  When she took the baby for her check-up, the pediatrician ran his hand along her spine and didn't say anything, so the mother brought it to his attention.  He said he thought it was a little fatty tumor, but would run some tests.  It was a Desmoid Tumor, and at 5 months old the docs tried to remove it, they could only get 1/3 of it taking half her back with it.  Her future does not look good.  So, please educate yourselves on this disease, it's horrible and has so many facets to it for which little is known.  Please, think about this and what you may be facing.  I hate to be the barer of bad news, but have seen first hand just how ugly it can be.  Cinti. Childrens Hosp. tests children at risk for FAP every 6 weeks for the Hepatoblastoma, alternating blood tests with untrasound, for 5 years.  This alone is an awful thing for a child to endure.  The physical and emotional strain that goes with this disease is over-whelming.  We have spoken with geneticists all over the country as to how often to test our 2 year old grandson since my daughter has not presented with any symtoms, they seem to all agree on the every 3 months, but my grandson's doctor thinks every 6 weeks is the best route.  My surviving son has had 3 genetic tests done, (the last 2 in the past 6 mos) and they are still unable to locate the mutation.  Have they identified the mutation in your husband?  It was never found in any of the affected members of our family, but the success rate of locating the mutation is only 70%.  I know this is a tough decision, but my daughter has chosen to not have more children.  Best of luck to you, and please do not hesitate to contact me.  You have my email, and my name is Debbie.

[j_groomer]

i see no reason why you cant have children hun x i have 4 x we are a FAP family x it comes from my husbands side x two kids with fap and two kids without x both girls are screened regularly (6monthly) and polyps are removed if they are too big and if there are too many polyps the large bowel is removed as in my eldest daughters case x she is a fine healthy woman now and has no troubles at all from fap as long as she is screened yearly xx  things are improving as time goes on ..... where my husband had major surgery 21yrs ago and it is now done by keyhole surgery on day wards xx take time to think it thru and make sure ur husbands fap family only has fap and not gardeners as well which sometimes comes with fap and has its own problems x if ur on facebook there is an FAP site which has lots of ppls stories   xx good luck xx just also to confirm that each child has a 50:50 chance of getting the disease i am just lucky that all 4 of mine didnt have it which is possible

[TaylsN]

Thanks for the advice, I've posted my question in some of the expert forums. FAP stands for Familial Adenomatous Polyposis. It's a genetic defect that causes colon polyps and eventually colon cancer. In order to prevent that, they remove the whole colon and being that there's a 50% chance of passing it on, we really wouldn't want to risk having kids without some sort of genetic screening.
               Thanks again,
                       Taylor

[paranoidpatty]

Hi TaylsN,

I'm sorry but I never heard of FAP so I can't offer any advice.  I only wanted to tell you that if you don't get any responses from anybody on this forum then you may want to try and peek over at the doctor's forum to ask this question.  

Hopefully someone else has some experience with this.

Good luck!

Trish