Standing on Faith: Thank you

Wednesday, January 21, 2009

Thank you

We want to thank everyone for all that you have done for our family during this trying time in our life. There is no way that we could ever find the words to thank you enough or even know who all has prayed and thought about our family. Allie touched so many lives! We greatly appreciate all who have made donations in Allie's name. It means so much to us to try to help others in memory of our baby girl. I have tried to post Allie's celebration of life video on the blog to share with everyone, but the file is too large :) Sorry. Saturday, we somehow managed to get through Allie's service. Some say that it is due to shock, but I like to think of it as God having his arms wrapped around us so tight that it has cut off our circulation. We are pretty much in zombie land and having a hard time believing that this is actually happening. Today marked one week without our Precious Angel, and it was an extremely difficult day for us both. Please continue to pray for our family. I will try to write soon about our last moments with our Little Angel. Thank you again for letting Allie be such a wonderful part of your lives.

1 comments:

susan5, February 4, 2009 at 10:33 AM: SUSAN YOU AND MICHAEL HAVE BEEN SO BLESSED BY ALLIE. ALTHOUGH SHE WAS ONLY A LOAN FROM GOD. YOU HAD THE OPPORTUNITY TO LEARN HOW TO CHRISH THE GIFT OF LIFE MORE THAN MOST EVER LEARN IN A LIFE TIME.YA'LL HAVE BEEN THE BEST EXAMPLE OF HOW CHIRSTIANS HANDLE PROBLEMS.LOVE,SUSAN

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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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Wednesday, January 21, 2009

Thank you

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