Standing on Faith: January 2014

Tuesday, January 14, 2014

A broken shell

Depression:

Definition (just my personal thoughts): That ache in the pit of your stomach that you wake up with every day for the rest of your life after witnessing your child suffer and then leave the physical world.

I know there are some that feel losing a child at such a young age would not be as hard as losing a child that is older. I can understand this thinking, because the longer you have with someone the more attached you grow to them, and it gets harder to say goodbye. Let me ask this question though, could you have said goodbye to your almost 5 month old child? It's painful at every age. It has been 5 years since I had to let her go, and I still feel the pain of her loss. This pain will never go away. I have to adapt to this new me. I have an introverted personality, and I like to keep to myself when I'm dealing with issues. I don't like announcing to the world that I'm struggling, and that most days I feel like an egg. I do my best to show this perfect outer shell to the rest of the world (to appear that I'm ok), but in reality if my outer shell were broken, then the horrible, raw, gooey stuff would ooze out. It feels so fragile most days. I wish it were something that I could control, but it is not. It has been 5 years and I'm not sitting and moping about it every second, but that feeling still remains. Some turn to drugs, or alcohol, or other things to get rid of it. I turn to junk food :) I know that it is only temporary and that it will give me health problems later, but at the moment I just want it to stop and I want to replace that sad feeling inside with something that is going to make me feel warm and fuzzy inside (and sweets always make me feel warm and fuzzy inside). There are also days that I just don't want to get out of bed, and then I feel guilty for losing precious time with my other blessings. They help me so much! I hate that my life took that turn. I feel like it has caused me to be a horrible mother, wife, and Christian most days. I hope I get credit for effort :) Sorry that this post seems so negative, but it is one of the few times a year that I allow myself to vent and hopefully help someone else that may be able to relate to the situation. I'm missing my Allie, especially today! This is one of those times when 5 years feels like an eternity. Can't wait to see her again!

What is Trisomy 18?

I would say that this is probably one of the most difficult disorders to try to explain simply because every case is different, but I would like to try my best to explain T18 in my own terms from my personal experiences and research I have read. For the most part, unless the child has major physical disorders or you know the markers to look for, T18 babies look perfectly healthy. Most people would probably pick up on their small size and possibly their low set ears, but some could easily go undiagnosed if it was not caught before birth.

T18 is a chromosomal disorder, also known as Edward's Syndrome. There are three different forms: Partial, Mosaic, and Full. In the partial and mosaic forms of T18 only a portion of the cells are affected, therefore having a greater chance to thrive. Allie had the most severe and most common form of T18, the full version, which means that every cell in her body was affected. When the baby is forming, somehow the 18th chromosome picks up an extra copy. Instead of only having two copies of the 18th chromosome, there are three copies. It was nothing that the parents did or didn't do to cause it to happen. This extra matter in the cells causes major complications during development. There is no way of knowing exactly which areas were affected the most or to what extent, so there is no way of knowing what complications each individual may have until further testing is done.

Even though each case is unique, there are many similarities that most full T18 babies have. Most have some type of heart condition (Fortunately Allie's heart condition was not serious, and she was able to live without heart surgeory~ others are not as fortunate). Some of the physical features they may have are small weight, low set ears, small mouth, tiny nasal passages, tiny ear canals, clinched fist, index finger overlapping middle finger & pinky overlapping ring finger, deformed chest, prominant nose, short big toe, and a small head due to their brain not developing to its full size; of course, since their brain does not develop to its full size this causes many other issues. Since every cell is affected in full T18 babies, they could possibly have major malformations with their internal organs. I know it is common for them to have kidney problems. There have been some reports of inverted colons, malformed intestines, esophogus problems, underdeveloped lungs, etc. We did not go exploring with Allie to see exactly what other internal complications she could possibly have. We figured if everything seemed to be working fine that it was not necessary to put her through any further testing.

The reason most parents are faced with difficult decisions is because these babies are not just a baby with a heart problem. You cannot just do heart surgeory and fix them. I would say the biggest complication is the brain. Your brain tells you to breathe, swallow, move, etc. Since T18 babies' brains do not fully develop, that means the automatic sensors that control the body did not fully develop either. Only God knows when this sensor will not be mature enough for the baby to keep thriving. Just like in Allie's case, it did not matter how well she was doing, when her brain was no longer able to send out the proper signals to the rest of her body, she was no longer able to thrive.

There is no way of knowing how long each T18 baby will live. The life expectancy varies for each individual case. Some are not even able to make it to birth, and the ones that make it to birth usually don't live to see their 2 month birthday, but there are a few who are able to thrive for years. Most of their lives are counted in days. These children are such a blessing to know and love, and I feel very strong that each one deserves the chance to prove how long they can thrive in this world. I hope that this information gives some help in further understanding Trisomy 18.

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Tuesday, January 14, 2014

A broken shell

Depression:

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