Tuesday, February 5, 2013

Delivery Diagnosis

Lately Mattie and I have been thinking a lot about how thankful and absolutely grateful we are that we knew about Johnny's diagnosis before delivery. It was so completely scary at first. It's so funny how we had treated it normally, I didn't even think about Mattie needing to be with me at my 12 week appointment even though that was where we had the first hint that we might be dealing with some unexpected news, I took my mom with me only because there was an ultrasound with it and who doesn't like to see pictures of the baby... It all seemed like part of the routine, just another every day appointment. When it became clear that was not the case, it changed so much about the next 25 weeks. A good chunk of those weeks was taken up with worrying, compartmentalizing, researching, diagnosing, talking, listening, worrying some more, but I would take every single second of those 25 weeks and double it to avoid having that weight thrown on me at or just after delivery. It was so worth the agonizing of the 25 weeks, but having a good idea that we might be facing it turn into definitely facing it rather than being blind sighted at delivery. Getting a confirmed diagnosis was a little risky. I had always said I would refuse an amniocentesis, but it became pretty clear once actually faced with needing more information that I was resolved to have it done. I know a lot of friends were worried for us and I was worried too. At the end of the day though, I knew we made a good decision. I weighed it heavily and prayed a lot about it. And it's not that I challenged God in my prayer, but I knew that if this baby was going to be taken from me, it shouldn't matter if the amnio was done or not, so I prayed and said "This is yours". I just had to trust and place our safety in His hands. It was really hard to do and it was really hard to do at a time that I didn't know for sure if I was feeling movement or not...so I had to be patient with anticipation that everything was ok. And bit by bit, week by week, we were able to deal easier with "T21". There were (and still are and always will be) times that tears spring to my eyes when I worry about my son. There were times that I would get so caught up in the diagnosis and forget about the human I was growing. But overall, the last 17 weeks of pregnancy were more healing to our hurt selves.

When the time came to meet Johnny, Matt and I said that even though our diagnosis was "in the room" with us, it wasn't a focus of his delivery or the time after his birth. We knew what to expect, we knew that we would face some extra testing, but overall we could completely enjoy his birth rather than trying to enjoy his birth then getting slammed with some pretty tremendous grief. And I definitely think there would have been grief in those moments. It wouldn't have changed how much I loved him just like the prenatal diagnosis doesn't change anything, but it is hard take all of the new knowledge in. It was almost like with his delivery relief came. People talk about birth as being such a physical manifestation of a spiritual thing and I totally agreed with that before, but I had never experienced it in such a manner before Johnny's delivery. While the worries and the concerns were (and are) still there, we were able to usher in all of the typical wonderment and awe that a newborn brings with it. My heart just hurts for Mommies who don't know beforehand and are having to deal with hormones and unexpected sadness that is hormone driven, who are completely exhausted, are trying to learn about their baby, and are grappling with all of the new labels and information being thrown at them as well when getting a diagnosis at birth.

And as a friend reminded me today, now that he is here, we are already receiving resources and the extra doctor appointments that he needs which will make all the difference in his development.

So several people, our Genetic counselor included, ask if we are glad we knew beforehand. The answer is a most enthusiastic yes, we are glad we knew beforehand. That being said, we are thankful for more and more testing that is taking place to get Mommies this information ahead of time. If/When we have a fourth, we will probably skip the screening and go directly for a new diagnostic blood test that is out which can detect T13, T18, T21 and Gender related chromosomal abnormalities with a simple blood draw. Now there are some issues I have with these tests being used in certain ways, but that is another post for another day. So even though we know the outcome can be and is wonderful even with T21 confirmation, we would still want to know ahead of time.

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