Standing on Faith: Welcome

Tuesday, January 6, 2009

Welcome

Welcome to our blog. We are the Brewer family and we have two magnificent children. A three year old son, Mason, and a four month old daughter, Allie. Our daughter has a chromosomal genetic disorder called Trisomy 18, Edward's Syndrome, which is typically thought of as not adaptable to life. She has already beaten the odds by surviving two months past the average life expectancy of these children. The purpose of this blog is to help provide updates of Allie's progress and other general information about our family. We are new to blogging, so be patient with us during our learning phase :) Thank you for visiting.

6 comments:

Aimee, January 6, 2009 at 9:04 PM: Let me know if you need any help with your blog. I am so glad you are doing this. Your little girl is such an amazing testimony of our Savior, Jesus.

I would love to see you again soon.
Gail The Reading Lady, January 7, 2009 at 8:26 AM: Susan and family. I know you will enjoy keeping this blog. Your faith is such a testimony to our Lord and Savior. Thank you for sharing that faith with us.
Love you all,
Gail Pace
jengallahar, January 7, 2009 at 8:50 PM: Thanks so much for creating another way for us all to watch the progress Allie makes! What a little miracle she is!
Unknown, January 7, 2009 at 10:18 PM: Hi Brewer Family
We are The Olliffe family from Australia. We were delighted to read all about you and your tiny miracle Allie. We too have a tiny miracle named Rori, she is seven months on the 11th Jan and like you we have been blessed in celebrating her first Christmas and New Year. Unlike you we haven't managed to post all our details on the Trisomy site yet. I would love to send some pictures of Rori and her big sister's to you so that you can see the wonderful similarities of our miracle babies. I will keep watching this space and may God strenghthen and watch over you all.
Deborah, Brett, Katherine, Nicola and Rori
Jed, January 13, 2009 at 8:55 AM: What a beautiful picture you have added to your blog. You can see how much Mason loves his little sister. Allie truly is a miracle and I continue to pray that God will bless you an her with more time to create memories.
Love,
Lynne
Unknown, January 17, 2009 at 5:21 PM: Hi Mrs. Brewer

I just wanted to say that you and your family will all be in my prayers and that i love you dearly. Although i did not know Allie personally i always kept up with her progress and i felt close to her. I know you are a very strong woman and Allie was so blessed to have you as a mother. If you ever need anything just give me a call.

Love,
Anna Graham

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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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Tuesday, January 6, 2009

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