Earlier this week I heard someone say "it's amazing the difference a year can make."
It really is QUITE amazing.
This week has been incredibly emotional for me. It was exactly a year ago today when we went into the ultrasound appointment that ROCKED OUR WORLD in a very scary way... we learned at that appointment that our baby would have a cleft lip, and you find out a little more about the days that followed HERE. It's crazy to think that a year and a day ago we were so clueless to what was about to happen and how our lives were about to be significantly changed.
I haven't been the same since that fateful appointment, and we didn't even know the full extent of her diagnosis until days after our daughter Lucy was born months later. I think in some weird way we honestly expected to go to the follow up appointment (which was 2 days after the first ultrasound) and have them tell us "oh, wait, we were wrong". But no, that did not happen... and this week last year was a nightmare - filled with fear, sadness and anger. We were in serious denial, and had so much fear for our baby and what this cleft meant. Do you know that just two days ago a women from my bible study told me she was born with a cleft? I mean, what are the odds... Seriously? I just "happen" to find this out this week? It was like God gave me a snapshot of what Lucy's life might had been like. This sweet woman expressed how tough her life has been in and out of surgeries and how she struggled with the notion of even having children because her chances of having a cleft baby were so high. I know Lucy's life would have still been tough even with "just the cleft." Really tough. But we would have had her to hold.
Now it has become important for me to raise awareness about Trisomy 13, and Trisomy in general. Honestly the more I have connected with other moms that have had Trisomy babies or babies with other genetic disorders, the more I realize that "1 in 10,000" is not as rare as you think!
Well, wouldn't you know...
March is Trisomy Awareness Month.
I can imagine that many mothers feel pressured to terminate pregnancy if they get a prenatal diagnosis that includes birth defects, especially when that diagnosis is "not compatible with life." Most probably don't even realize that there is a chance they will meet their child. Lucy's diagnosis was "not compatible with life"... but Lucy lived almost 6 days! I remember reading the description of her condition in words the night we received her diagnosis, when she was still living and breathing before us. She LIVED, yet those words told me she could not. I feel the need to speak out and protect babies like Lucy, and I have come to believe that "if you have a pulse, you have a purpose." Though I would not judge someone for their personal choice, it makes me so sad that some parents would say goodbye to a baby like Lucy before they even got the chance to meet him or her.
Meeting and losing Lucy was truly heartbreaking... but I am filled to the brim with joy to have known such a special little girl and be able to call her "mine."
Here are some facts about Trisomy 13 / Patau Syndrome:
- Trisomy 13 is a genetic disorder in which a person has a third copy of material from chromosome 13, instead of the usual two copies. (Trisomy 18 is similar, but it affects the 18th chromosome. Down syndrome is the most widely known Trisomy - which affects the 21st chromosome. Defects tend to be more severe the lower the number, from my understanding.)
- Approximately 80% of Trisomy 13 babies have a "full trisomy" where every single chromosome set is affected (this is what Lucy had).
- Approximately 60% of Trisomy 13 babies have a cleft lip and/or cleft palate (Lucy had both).
- Approximately 80% of these babies have a congenital heart defect (Lucy had a more "minor" heart issue, which was not seen prenatally. They said it was something that normally would not have affected her until much later in life).
Much of the above information and more can be found here.
The two websites below are ones I have found helpful both for the information/resources and for the stories of other families going through what we have:
Recently I was made aware that presidential-hopeful Rick Santorum and his wife have a Trisomy 18 baby, Isabella. I realize that when that news hit the general media, most people were hearing about this chromosomal disorder for the very first time. A year ago I would not have known the first thing about Trisomy. This video was posted on his blog, and definitely touched my heart. Here is an article the NY Times posted after a more recent health setback. What a special little girl she is! I am just inspired by someone so much in the public eye raising awareness.
Despite hearing inspiring stories and connections with other families, the obvious fear for us is that something similar happens again with another baby. I am sure many wonder if Jeff and I are more likely to have another baby with Trisomy 13. The answer is, not really. The doctors may say our risk could be considered increased only because we did have a baby with the disorder, but the chances are still very, very slim. We do not carry any genetic material that was responsible for the Trisomy. It was random. Regardless of knowing that, does worry still enter our minds? OBVIOUSLY. But then we think about what a blessing Lucy has been to our lives and will continue to be in the life of her big sister, Avery. And I think about the simple fact that Avery is healthy, happy and HERE with us on this earth. She is my proof that we can have a non-Trisomy baby, yet she also confirms to me that Lucy was not a mistake on anyone's part. Just as Avery was meant for us, Lucy was meant for us - all of us.
Each baby is 100% unique and special. If God chooses to leave our family just as the four of us, we will be just fine. Any way, it seems strange to consider "planning" for anything when OUR plans got thrown out the window ages ago. Yet, I look forward to what God has in store for us.
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