Meet your match, get married, buy a house, have kids.  The majority of my female friends will be having kids later this year or already have kids. A couple of years ago my facebook wall was plastered with wedding photos from various friends.  Now the babies are all over the news feed.

Since we purchased our house last year, I have been getting questions like, ‘when are you guys going to have kids?’ or ‘have you guys discussed having children?’.  This is now a fairly difficult question to answer.  A simple, ‘oh we aren’t there yet’ is the easiest response that I usually give.

I have a 50/50 chance of passing this gene onto offspring.  So there are a few options that we are considering.

1) Conceive naturally, then get amniocentesis to determine if the gene was passed onto the child.  At this point, you must be sure that you will abort if the gene is passed or you have just taken child’s right away to chose to be tested or not when they are an adult.  This is an ethical dilemma.   This is also all covered by OHIP.

2) Conceive naturally, have the baby, try to not think about the 50/50 chance you passed the gene on. Hope that your kid wants to be tested when they are an adult.  Accept that if they develop gastric/breast cancer, they had the choice to be tested or not and watch them die.   It’s a tough thing to swallow!

3) In vitro fertilization.  From what my genetic counsellor knows, no one has gone this route before with CDH1 gene but it is possible.  You can extract the eggs that don’t have the gene so it won’t be passed.  Once the egg has been fertilized and implanted, you can under go amniocentesis to be sure the right egg was chosen or just hope for the best.  Amniocentesis carries a risk of causing an abortion so this is a little scary.

Also, from what I know about in vitro is that you have to inject artificial hormones to help stimulate the eggs.  These artificial hormones carry a risk of developing breast cancer.  But what if you already have a 40% chance of developing it on your own?

Another thing that my husband and I have been discussing when to have the kid(s) – before or after the prophylactic gastrectomy. There is one study that showed that you can have healthy children post prophylactic gastrectomy.  It is just considered a higher risk pregnancy and you should be monitored closely.  You also have a very high chance of becoming anemic and needing blood transfusions.  This is fairly common.

Here are some pros and cons we’ve come up when having the kid talk.

Pros of having kids before:

– will have a closer to normal pregnancy

– there is a low risk that I will get full blown cancer over the next few years
– more energy to raise them

– if they remove my stomach and find cancer in it and in the lymph nods, I will may have to go through chemo which will affect the integrity of the eggs.


– I approach closer to the average age where people develop HDGC

– more mental stress that I may be a walking time bomb

– We will have small children to take care of when I go into surgery and through the recovery

So far we’ve concluded that we should take care of what we do know first and then think of all the secondary things.

We have a meeting with the fertility specialist Feb 26th, the meeting with the Gastroenterologist in Toronto (who did my mom’s surgery) and also a meeting with a dietitian to discuss how my life will change post total gastrectomy on March 12th.  After those meetings are done there will be no more medical consults and just the decision of when to have the stomach removed.

Dun Dun Daaaaaa…..


10 thoughts on “Babies?

  1. Whatever you decide, just know you will always have friend and family to help you out! Your not alone, and don’t ever be afraid or embarrassed to ask for anything, whether it be a ride to an appointment, a hand to hold, someone to make you meal or tend to any future children!

    I love how positive you have been about all this, you are a true inspiration to me Rachel!

  2. My wife and I keep going back and forth between having another natural born child and/or adopting a second child. There are some days that we think “no way, don’t want to pass this on”. Then I see our daughter laughing and playing and think, “let’s just go for for it, if she has the gene, going through this now will allow me to walk her through this 20 years from now”.

    We were listening to public radio a few weeks back and they had a geneticists talking about heredity cancers (I’ll see if I can find the link), and he talked about the idea that in the next 20-30 years, we could be able to map out all cancer genes and cure it at an earlier stage. While sometimes it sounds like one day we will have flying cars, I just think of how far we’ve come since my sister died in 1996. They didn’t even know this gene existed 20 years ago.

      • It is not stressful at all. You cuddle with her and see her face, I wouldn’t trade that in for anything (I’ll try and post a picture). I figure it’s just like anything else she would inherit; both the best and “not so best” parts of us. I’m just incredibly thankful that they can do something about it, and maybe in the next 10-15 years they’ll develop an even better screening process. The way I see it, if my parents had known about this gene and had me anyway, I wouldn’t be bitter because I love my life, but like anything else there will be things we have to deal with in life: broken hearts, stubbed toes, and gene deletions… With all of that said, I still go back and forth with it and right now we’re just looking at the surgery up ahead. I’ll be praying and following you guys closely as you make a decision!

  3. Hey Steve, good to hear you don’t stress too much about it. I think we are leaning towards the natural route without genetic testing until the baby is an adult. I also feel the same way about my parents having me. I am glad they didn’t abort me or choose not to have me just because of this gene mutation. I’m so happy we can do something about it!

  4. Hi there, I came across your blog through another CDH1 gene carrier, Marne. I was also diagnosed with the gene last year and am booked to have my surgery in only 8 days so it’s been really comforting to find a few people with similar stories and read how everyone is coping. I lost my mum when I was really young to stomach cancer and more recently my little sister. I completely understand how stressful it must be with the decision to have children naturally and it’s something I’ll have to deal with eventually. Back when my mum was sick the genetics testing wasn’t possible so it was only after losing my sister we discovered it. Even with all of the pain my family has been through, I wouldn’t change the fact that I’ve been given a chance at life and the recent genetics discovery has given me a whole new appreciation for life and a realization of the things I need to do. I think whatever decision you make will be the right one and you have all of the information for the future to be able to pass on. My sister had 2 little baby boys who will eventually have to be tested but they’re so beautiful I wouldn’t have them any other way. Appreciate you sharing your stories. My blog is 🙂 good luck with your surgery when it does come around. Kate

  5. Hi I’ve just come across your blog. I’ve recently been diagnosed with the cdh1 gene I have a daughter who is 4 that potentially could have the gene but they won’t test her until she is concent age. I’m at the stage where I desperately want a baby I’m going down routes to find the best way. Natural and take a risk ? It’s so hard not knowing how to feel as I didn’t no about the gene with my first but I do now. Did u decide to have a baby? Any help or just a chat on this would help me thanks Sam

    • Hey Sam!
      Sorry to hear about your recent CDH1 diagnosis. I remember that being an incredibly stressful time. However, I feel it has made me stronger as a person overall (I know, it sounds weird).

      I still haven’t had a child but something that is still in my future. It must be difficult for you because you didn’t have the choice for your first child and now have a choice for your second. There are many schools of thought on IVF vs. Natural. I bounce back and forth between the ideas. I’d love to chat about this for sure. Shoot me an email in my questions section 🙂

      • Hey Sam, I’m sorry for the delay but I just was notified that my email reply went to another person in Canada. There must be an issue with your’s and her email address. Ha. Is there another way I may contact you or can you resend me your email address?

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