Recently we found out that my younger sister is pregnant! This is great news and deserves to be celebrated. She has been married to her husband for a little over a year and they were trying to have children, God gave them one. I am happy for her, I know how much she wanted a child, she had been talking about it since before she got married. Unfortunately the happiness I have for her was not my initial reaction to hearing that she was pregnant. Initially I thought about the fact that my sister also carries the CDH1 mutation. Her child, just like all of my mothers children, will have a 50% chance of having the CDH1 gene.
My mother had three children, 2 out of the 3 have the gene. We all had the same chances, 50%. When my mom first told us about the mutation I thought 50% were pretty good odds. And when my brother tested negative for it I thought for sure I would test negative too, but I didn't. I remember the genetic counselor calling me, I was home alone sitting in my bedroom, and she told me I tested positive. I had just watched my mom undergo a total stomach removal, I saw my mom beg the doctors to kill her because the pain was so horrible. I started to feel tears fall down my face as I held the phone, I had just been given the worst news in my life I thought. My entire life just changed in one phone call.
Of course the first person I wanted to tell the news to was my mother, she was actually on her way back to Johns Hopkins because the staples in her stomach had come loose and she had to get them fixed. I told her that Rebecca, out genetic counselor, had just called me and told me I tested positive. It was then that the news really started to sink in. I was screaming. I was crying so hard that I was screaming into my mattress. I feel awful for telling my mom the news as she was headed back to the hospital to get her staples fixed, she was fresh out of the most agonizing surgery she had ever had, and here I was screaming and crying telling her that one day I was going to have to get that surgery too. When I hung up I took so much anxiety medication that I passed out, I cried myself to sleep and I don't remember how long I slept or even waking up. I wanted to forget. I wanted it to all go away. I thought if I took enough of the pills and slept my emotions couldn't hurt me. But we all know pills wear off, mine did. And I came to terms with the news I was given. I put on a strong face, I returned to school and sold bracelets to my sorority sisters from No Stomach For Cancer, a foundation that supports research for the CDH1 gene. I got "Kia Kaha" tattooed across my leg, the affirmation that No Stomach For Cancer uses meaning "Be Strong Hearted". I hid everything that was going on in my head behind selling bracelets and getting a tattoo because I could not deal with the reality of the situation, and I didn't want anyone to know how much I was hurting. The only people who knew the truth was my, at the time, boyfriend (later to be husband) and my best friend. I stopped looking forward to my birthday because every year meant one year closer to getting the surgery. One year closer to living life without a stomach.
When my sister tested positive my heart sank. I had prayed that she wouldn't have to deal with everything that I dealt with mentally. And now I pray with all my heart that her future child, my future niece or nephew, is not given the same news. They have a 50% chance.
For myself, 50% is too much of a chance. My husband and myself have decided that we don't want to have children because I cannot live with the idea of watching my child go through what I went through. I think my sister is stronger than me in that aspect, regardless of the outcome or the struggles she will have a baby of her own, a baby that she carries for 9 months and that is hers. Am I capable of having a child without a stomach? Yes. Technically you can carry a child even if you do not have a stomach, my surgeon said many women have done it. But nutritionally it is very difficult, and again you always have to worry about that 50% chance.
My husband and I have talked a lot about adoption, neither of us is ready for a child now but we like to think that later in life we could give a child a better life. My best friend and I have talked about the idea of surrogacy, where I would undergo IVF to make sure the egg that is planted is not a carrier of the mutation.
But the reality is I may never have a child because of my fear, because of the 50%. Does it upset me? Absolutely. I have spent multiple days crying over the fact that I probably will never see a little me or a little mini version of my husband. My sister is brave, she is willing to take on anything that comes her way in order to have a child. I admit that I am not that brave, if research can only guarantee me a 50% chance of my child to live a normal life then I am not ready to take that chance.
Will I ever have kids? I doubt it. The hurdles I would have to go through for IVF and surrogacy are expensive and my doctors at Johns Hopkins said it doesn't work out as often as you would think. Will I ever adopt? Maybe one day in the future my husband and I will find ourselves at a point where adoption is something to seriously talk about.
For now I just stay positive for my sister and my future niece or nephew. Yes they have a 50% chance of having the mutation, but they also have a 50% chance of not having it.
50/50
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