Standing on Faith: January 2011

Thursday, January 13, 2011

Allie's 2nd Amgel Day

Well, we meet again- the blank canvas for my emotions. It's been quite a journey to get to this point, but here I am two years later. I thought I'd die right along beside her, but through God's strength He managed to keep me going. My heart will never fully recover, but I'm here. I'm here to share her precious story with others. I'm here to help comfort those that share my pain. I'm here to teach my children that you just keep going when life knocks you down. I'm here to show my children how to depend on God to get you through the tough times, and I'm here to watch Allie's memory live on through them. I'm not going to say that it is any easier today, two years later, because I still have days that bring me to my knees, but as time passes my breakdowns do grow further apart. There are still so many more things I wish she could have enjoyed with us. It would have been so precious to watch her grow with Reese. Today I will think of her and about the little girl she might have been, but smile at the little angel she has become. Mommy loves you and misses you, sweet Allie.

These are a few pictures we were able to capture of a butterfly on Allie's Butterfly Bush we have planted in her memory.

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.

Allie's Slideshow

Labels

Contact Information

About Me

Thursday, January 13, 2011

Allie's 2nd Amgel Day

Followers

Allie Rebecca Brewer

The Purpose

Trisomy 18 Foundation

What is Trisomy 18?

T18 Medical Links

My Blog List

About This Blog

Blog Archive

About