Trisomy 13 is the result of having three copies of chromosome 13 in each cell in the body instead of the usual two. The extra genetic material disrupts the normal course of development, causing characteristic features like severe intellectual disabilities and physical abnormalities in many parts of the body such as heart defects, brain or spinal cord abnormalities, very small or poorly developed eyes, extra fingers and/or toes, a cleft lip with or without a cleft palate, and weak muscle tone. Due to the presence of several life-threatening medical problems, many infants with Trisomy 13 typically die within their first days or weeks of life. Only 5 to 10% of children with this condition live past their first year. Most cases are not inherited and result from random events during the formation of eggs and sperm in healthy parents. However, an error in cell division called non disjunction results in a reproductive cell with an abnormal number of chromosomes. For example, an egg or sperm cell may gain an extra copy of chromosome 13. If one of these atypical reproductive cells contributes to the genetic makeup of a child, the child will have an extra chromosome 13 in each cell of the body. This is called Translocation Trisomy 13 and it can be inherited.
The doctor's stated Baby A had underdeveloped eyes, she had a cleft pallet, little to no muscle tone, and overall they didn't feel the prognoses was good. They did give it time to see if Baby A would improve as well as give the family time to decide what they felt would be best. However, in the end the doctors made the decision to take her off the ventilator. Everyone thinks that silence is just silence, until you have been in the room at the same time that someone takes their last breath and their heart beats for the last time. It's a silence like no other and it is a silence I have experienced with my own child. I was 22 years old when I had to make the decision to let my daughter go because it was truly what I felt was be the best thing for her. The mother of Baby A was only 19 years old and on November 18th she had to bury her first born.
I have two reasons for sharing this story. The first is for everyone to ask themselves, what is the hardest decision a 19 year old (or any teenager for that matter) should have to make? Where to go out with their friends? What to wear to a party? Which college to go to? What do they want to do over summer break? Should a teenager really be making the decision of whether or not to allow someone to live? The answer in my book is no! Another issue is that a lot of grown women and the majority of teenage girls don't understand not all babies are born healthy! Things do not always go well. The cold, hard facts are, some are born with illnesses, some are born with defects, and some just don't make it. Then you are faced with the stress of not only raising a child, but raising a child with special needs, not only the cost of raising a child, but the cost of raising a child with special needs, and in some cases, how to pay for a funeral. Tell me, does anyone right now really have $10,000 to $12,000 just laying around? I don't! And that is a general figure of what it costs to cover a child's funeral. Not all stories have a happy endings. I will be the first one to admit that when the doctors kept trying to explain the issues with my daughter, I kept saying in my head, "everything is okay, she is going to be fine, the bad stuff only happens on TV". Well that was until they came in and flat out said, "you have a decision to make!" It doesn't just happen on TV, it doesn't just happen to the other guy!
Discussing the things that can go wrong, brings me to my second reason for this story. The growth of a child is pure chance, pure genetics, and I believe, pure faith. There is really nothing we can do to control any aspect of it because nature is going to do what nature does and you are left praying everything goes the way it should. However, I fail to understand in any way, how people can know there is always a chance something might go wrong all by itself, but yet some mothers make a choice that in addition to that worry, I am going to add additional worry by deliberately doing things I know could cause harm to my baby like drinking or doing drugs? Someone please explain this to me? Everyone was a child at one time and had to go through all the heartaches of growing up...school, bullies, puberty, parents, relationships, dating, peer pressure, and the list goes on and on. Why would you intentionally do something that could possibly create a larger issue for a child and make the growing up process that much more difficult? Personally I feel like saying "who do you think you are to play with another person's life path?" Most parents will say they love their child more than anything and would literally die for them, but I'm sorry, I have to ask myself "how can that be true when you are intentionally doing things that could severely harm your baby?" I don't think you would if you had ever actually seen what a baby born addicted to alcohol looks like, what a baby born addicted to drugs looks like, and/or what kind of physical, mental, emotional, and/or behavioral handicaps those things can cause. I have seen them! It is saddening, angering, and heart breaking all at the same time to see how these kids struggle for no other reason than the selfishness of someone else. Now there are doctors who say drinking wine in small amounts is okay. I don't agree, but even if that is true, they said nothing about taking shots of tequila? I guess I just feel that if you had the time to make a baby, then you could at least give that child a fair shot and abstain from nonsense for 40 weeks because the fact of the matter is that baby didn't ask to come into this world.
I have said many times that what I write is simply my opinion, people can take or leave it, but just as my page states, I feel there are many times I am just saying out loud, what most people are already thinking. However, when it comes to children, yes I do get very defensive because I have spent a huge portion of my life devoted to them and many times have worked with kids who had developmental, physical, emotional, and/or behavioral issues for no other reason than the activities the mother chose to partake in while she was pregnant. I flat out don't understand it and I am not going to pretend I do. If the addiction is that strong, then don't get pregnant because as I stated before, sometimes the issues are so great the baby does not even survive. I did everything I was supposed to and still had 4 out of 4 born very sick and one didn't make it. I wanted a house full of kids, but it was clear my body was not going to allow me to make a healthy baby. I couldn't watch another one struggle so hard so I decided to stop having them because I didn't think it was fair to continue forcing whatever was wrong in my body on my children. If you were to think right now what is the worst or hardest decision you ever had to make in your life, I guarantee you it would not compare making the decision on whether or not to let your child live or die and if you haven't had to, thank God and pray your luck continues. You would be hard pressed to find even one person in the world that can say they have never heard the words "having a child is an enormous responsibility", but maybe after reading this, some people might truly understand what those words mean.
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