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Having a child with a terminal illness is a heartbreaking thing to have to deal with. You can feel completely hopeless and dependent on the hope that whenever your child needs a transplant, they'll be high on the list, which is rarely the case. Because of this, some desperate parents have turned to 'donor babies' or 'test tube' babies. Donor children are born for the sole purpose of being donors for their sick siblings.
One of these donor babies shared their story of what it was like growing up as her sister's savior.
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You would think growing up as a donor child, the author, whom we'll call Stacy, would be blindly bitter and hateful toward anyone who would even think about having a donor child, but she isn't From a neutral point of view, Stacy completely acknowledges that some parents are just really desperate.
"Any parent can lose their senses when their kid is dying. Mine, especially my mother, however, was straight up narcissistic and crazy, too."
The story began in preschool when Stacy's sister, Jessica, was diagnosed with Fanconi anemia.
"She was going to need transplants and neither of my parents' nor my older brother's tissue was compatible with her. So they had another baby. I wasn't a cherry-picked test tube baby, I was conceived normally so there was no guarantee that I was going to be a viable donor, but I happened to be a match. I wish I wasn't."
The first time Stacy was called up to sacrifice a part of herself was when she was just a toddler. Her sister needed bone marrow. It wasn't the actual procedure that Stacy remembers most, but it was the way she had to live her life that she can't forget. She knew even from that age that her role in life was to be a tissue donor and her life revolved around it.
"I was not allowed to play sports, I can't risk injury because who knows when my sister's going to need a part of my body. I couldn't eat a cookie or anything that's not vegetables or fruits or tofu or chicken. I had to maintain impeccable health so my organs or blood or whatever would be ready for harvest at any given time. I wasn't allowed to take any medicine because my sister might need emergency surgery any time so how could I let medicine stream through my veins? My mom actually made a HUGE scene when a school nurse gave me Tylenol for my headache. No summer camps, can't risk going far away from my sister. But nothing really happened for years, my sister seemed alright so I thought she was just paranoid."
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Then things got worse and when she was 12 and Jessica experienced renal failure. No one explained anything to the confused Stacy. No one asked if she wanted to donate her organs or even explained what was going on.
"I just knew I had to have surgery. Being cut open to have my organ extracted and being in the hospital for weeks was a lot for a 12-year-old to go through. Naturally, I was going to complain about it, but whenever I seemed remotely unhappy about the whole thing my mom bashed me and treated me like a cold-blooded psychopath who wanted her sister dead."
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"My mom's craziness drove relatives and neighbors away. The incident with the school nurse and her threatening to sue the school and stuff made school faculty secretly hate me, too. I had no friends because I couldn't participate in after-school activities or go to birthday parties because there are cakes."
Stacy couldn't find any relief from her father either. He chose to bury himself in work and feign ignorance to how his wife was treating their daughter. Her brother retreated into video games and drinking to escape the insanity of home life. And her sister was usually too sick to help her with any form of support or a meaningful relationship.
"At least my parents compensated him for their absence with money. He had what all teenagers dreamed of; unlimited credit card and parents who don't care. I'm not saying my brother had it easy but he wasn't the one whose kidney was taken away. At least he had money and time to play with and lots phony 'friends,' though they only liked him for having loose parents (hence a place where they can do anything) and money. I literally got nothing, and had nobody to rely on."
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They say knowledge is power, but in Stacy's case, it was more of an escape route.
"I studied like a monster. I figured that if I graduate high school early then I could go to college early and I could get away from this whole thing sooner. Well, I have never been so wrong. My mother actually forged rejection letters from the universities far away so I'd have no choice but to go to school in my area."
Stacy's mother wouldn't even allow her the safe haven of a dorm room.
"My school required all freshmen to live in the dorm, but my mother somehow made them make an exception. I guess 'she needs to be there for her terminally ill sister' is a good enough reason to bend the rules."
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Not long after starting college, Stacy's sister developed a liver tumor and needed a liver transplant. At 19, Stacy was finally of age to legally make her own decisions and finally be able to say no... or so she thought. Even the law is no match for a manipulative parent who knows exactly where to hurt you the most.
"My mother threatened that she will stop paying my tuition. I said I would rather be in debt until I die than be coerced into surgery but then she screamed that I couldn't even get a loan without her signing the forms. I had a breakdown. I actually went up to the rooftop of the building thinking of taking my own life but one of the doctors talked me out of it. I ended up giving part of my liver. I wasn't too upset about my liver, it will grow back and I was going to give it if they eventually failed to find another donor in the system. My mother's control over my life is what scared me so much."
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After the liver transplant, Stacy's sister experienced some post-operative complication and in the end, passed away. Both the girls were finally free of their burdens.
"I wasn't even sad. All I could think was that I was free. I had to force myself not to smile at her funeral. I do really sound like a cold-blooded psycho now, but without her, I could finally be myself and not some backup plan in case her own organs failed. The first thing I did after her funeral was applying to universities in foreign countries for transfer so I could get away from the people who treated me like a pig at a butcher house, strip me of my life and take away whatever body part they needed."
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Now, after all the suffering, Stacy is finally able to take her life back and create a future she wants. She can finally do what makes her happy.
"I am going to start a grad school stem cell research program in a month, and it got me thinking about what got me into this field in the first place. Maybe someday I could grow organs so no more people like myself have to suffer."
The idea of having to live your whole life feeling like nothing but an organ cooler is one many can't even begin to imagine. The entire situation sounds like something straight out of a dystopian novel or someone's nightmares.
In reality, more than just this one family are doing this and it really makes you think about the future of society. If you knew your child could possibly have a chance at a future by having a donor baby, what would you do?