Standing on Faith: January 2012

Friday, January 13, 2012

Happy 3rd Angel Day, Allie!

Three years ago today my sweet baby angel spread her wings. I was told that it takes about that long after a loss to begin putting the pieces of yourself back together. I'm starting to see that little by little. My days are not perfect and there are even times that I feel like I'm going backwards instead of forward, but somehow I learn to just keep going. Not sure how it happens, I just know that it is only by the grace of God. I'm sure Heaven rejoiced on this day three years ago, but it left a permanent hole in my heart. Maybe one day I will be strong enough to rejoice as well. As for now, I can't help but wish for her to be back in my arms. I long to just dream of her, so that I can see her once again. As you can see, I still have a long way to go, but I feel like I can definitely say that I am in a better state of mind now than I was three years ago. So time does change the pain (I can't say that it takes it all away or heals it, but it does help). My imagination runs wild when I try to think of what she might look like now, and I can't help but smile when I think of her running and playing in Heaven with all of the other sweet angels. For some reason, I always picture her with redish, brown, curly hair, wearing a white dress, and twirling :) It is also interesting to me that her baby sister, Reese, LOVES to twirl, and does so on a regular basis (I need to research and find out how common it is for a one year old to be able to twirl ). God truely blessed us with Allie, and we cannot be more thankful for the opportunity we were given (to be the parents of an angel). Our love for her is so strong, and she will forever remain in our hearts. My prayer is that God will continue to let us have more good days than bad, and that he will show us the best ways to use our experience to help others and spread His glory. We are thinking of you, Allie, today and always! We love you and miss you very much.

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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Friday, January 13, 2012

Happy 3rd Angel Day, Allie!

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