Wednesday, May 23, 2007

Introducing Emma Grace Abler

I've thought for a while whether or not to go public with this information, but after thinking about it only good things can come from this, so why not?

As some of you may or may not know, we are pregnant with our second child. About 3 months ago, we went in for our second regular ultrasound and what we were expecting to be a happy day turned into a complete nightmare in a matter of minutes. Two level II ultrasounds, an echocardiogram, many doctors, and genetic chromosome tests have confirmed with 100% accuracy that our little girl has very rare and fatal choromosome disorder known as full Trisomy 18 (Edward's Syndrome). It occurs randomly in about 1 in 6000 pregnancies where the 18th chromosome has one extra on every cell of her body. There is no known cause of it and it's nothing we did that resulted in this and nothing we could have prevented.

The bad news is that 18th chromosome has a major impact on many of the features that are needed to sustain life. In our Emma's case it has severely impaired many features and organs of the baby including multiple heart defects (large VSD, pulmonary stenosis, overriding aorta, likely 'Tetralogy of Fallot'), diaphragmatic hernia (stomach and intestines are in the upper chest compressing the heart and lungs), clenched/overlapped fingers, cleft lip/palate ... and the list goes on. Her case appears worse than the normal T18 case. Multiple doctors and experts are not expecting her to make it full term, and if born alive they do not expect her to live more than a few minutes, but they do not expect her to suffer during pregnancy or birth.

Obviously when given a diagnosis like this you have a lot of questions and decisions. Despite the fact that approximately 90% of these cases are terminated, we decided to continue on as normal as we possibly could and celebrate her life. Maybe we will get a chance to meet her during her brief stay with us, maybe not, but all she will know is love in this world.

We've named her Emma Grace Abler. The name has significance:

We had brainstormed a few names, but one day I was on the computer surfing and thinking about baby names in the back of my mind. Our son Andrew (18 months at the time) came into the room and picked a random book off the shelf out of hundreds to pick from and brought it to me. The book was "Baby Names and their Meanings". I was amazed that he picked out that book out of everything on the bookshelf, so I picked him up and put him on my lap. He then opened the book to the page that had "Emma" at the top. The book read "Emma: is of German origin, and its meaning is "whole, complete". Andrew then pointed at the name and said "Emma". I then flipped the page there was the name Grace. The book read "Grace: is of Latin origin, and its meaning is "favor; blessing". A virtue name referring to God's grace."

I was a little stunned at this point, I thought to myself what had just happened. I also thought that given the situation, I don't think there could be a better name for her. The meaning fits perfectly; it is beautiful, and it basically means that despite her diagnosis - she is a whole and complete blessing to us from God. It was perfect. Now, I generally don't get all caught up in the angel or spirit stuff, but I have to wonder if there was some kind of angel teaming up with Andrew to make this happen at that moment? It was just an amazing experience that's really hard to describe that feeling.

We are now at 30 weeks, and she is still alive and kicking. We feel her roll and kick and punch, and she has a strong heartbeat at every doctor appointment. She seems comfortable and content. Despite the difficult emotional times, we have met amazing people that seem to come out of the woodwork from many walks of life. Friends, friends of friends, hospice, photographers, counselors, co-workers, Trisomy 18 Foundation and SOFT Organization ... it's amazing. I will share these stories about the incredible people we've met in future posts.

For now, just know that we are doing the best we can and just taking everything day by day. We are blessed to have wonderful support of our families, friends and others. Please feel welcome to approach me and discuss anything about this situation, I am comfortable with it and it is a part of the journey we are on. There is no reason we shouldn't celebrate her life as much as any other life.

I will close this post out with this quote I found recently:
"Life is not measured by the number of breaths we take, but by the moments that take our breath away."

2 comments:

w8in said...

I wasn't aware of this (hah..until last Saturday I didn't even know you were expecting).

I admire the positive attitude you've taken and also the frankness of your blog about this important situation in your lives. I do hope you get to say hi to Emma!

Ben Abler said...

Thanks for the comment, we hadn't really told too many about it until I figured, why not -- it can't hurt anything and could only make things better.