Sunday, August 31, 2014

Triploidy

Well, we got the call from our doctor with the results of the first part of the amniocentesis on Friday evening. I didn't think the news could bring more disappointment, but I was wrong. We were told that our baby has triploidy. This means that there are 69 chromosomes instead of the 46 that there should be. It's not just one chromosome that's affected as in the case of a trisomy like we originally thought; it's all of them. One of the main issues with triploidy is the fact that it's so rare. This only happens in about 1% of pregnancies and the majority of those miscarry in the first trimester. So we have a fighter on our hands, who is beating the odds. That said, my OB was concerned about the possible health risks to me. The doctor who did the amnio had seen one case of triploidy when she was a resident probably 15 years ago. The woman came in and was seizing because she had developed preeclampsia which moved quickly into eclampsia due to the fact that the baby was triploid. I think that this caused a lot of worry to my OB and the other doctor because it's a risk to me. As I was talking to her, it seemed like the choice was how to deliver: vaginally or surgically. Obviously, this news was devastating to me as I thought about the fact that I want to continue the pregnancy but also have other people to take care of.  As we ended the conversation she told me that she would call me as soon as she got the rest of the amnio results and asked if we would like to know the gender. I told her yes. Our sweet little angel is a girl: Rose Marie Stringham.

Initially, it seemed like my decision had to be between delivery methods and I was heartbroken. Rose has fought so hard to make it this far that deciding to end that fight didn't sit right with me. We started researching and getting information from other health professionals to help widen our base of knowledge. A lot of our research informed us of the rarity of our situation and made me realize that we weren't going to be able to get any definitive answers about the odds or likelihood of the pregnancy becoming a risk to me. There just isn't enough data. Two of Matt's sisters, Ashby and Stacey, got in touch with their OBs and explained my situation and asked their opinion on the pregnancy and what they would do if I were their patient. Both of them said that they would start treating me as a high risk patient and have me come in weekly to check my blood pressure, urine, and Rose's heartbeat. Then, if the situation warranted, and I developed preeclampsia, we could make a decision then based on an actuality rather than a possibility. Ashby then talked to her bishop (or ecclesiastical leader) today who has been an OB for 30 years. This coincided with Matt and many family members fasting and praying that we would find some direction and answers to our plight. Matt and I also received very comforting priesthood blessings that helped us feel hopeful.

As our home teacher who had helped with the blessings was leaving, I got a call from Ashby telling me about her conversation with her bishop. He told her much the same as far as how he would treat me as a patient. He explained that they would want me to get to 28 weeks when she would be viable and have a chance of not dying during labor. But he also told her that he has had three patients who were pregnant with triploid babies. None of whom developed preeclampsia. And one of whom carried until 37 weeks. Heavenly Father is so aware of us. It was no coincidence that Ashby called when she did. We as well as many of our friends and family had been earnestly supplicating the Lord for guidance. And He has not forsaken us. It is an absolute miracle that this doctor has seen three cases similar to mine all of which were healthy pregnancies. When we look, we can see the tender mercies of the Lord. He is watchful and mindful.

I don't know how long Rose will be able to keep fighting, but I do know that I will help her to do so for as long as I can. She has already defied the odds many times over. We know that we may not get to meet her while her perfect and valiant spirit is still in her body and it is absolutely heart wrenching. But I know and have faith that we will get to raise Rose in the eternities. This is not the end for her-- it's truly only the beginning. We will be blessed to have someone on the other side who will watch over her younger siblings until it's their time to come to our family. In my mind's eye I can almost see it: she's telling them one by one how much we have yearned and prayed for them, how she knows we will protect them when the odds are with us since we watched over and protected her when there was no hope of bringing her home. How I love our little Rose. I can tell she has a will to rival her older brother's. She is literally the embodiment of what it means to fight.

7 comments:

  1. I am so glad you were able to get some extra opinions and that you are receiving comfort. You are an example to me of how important it is to turn to God for peace. Thank you for sharing this.

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  2. My heart aches for you and your family. I am still a little emotional from having Samuel. I cried reading your heartfelt and loving message. I pray for you all, especially for Rose to keep being strong. I am so thankful you guys feel our Heavenly Father's peace, guidance, strength, and love. You're right, he has not forsaken you. He has brought you closer to Him and He is so mindful of you. I I'm so glad your sister-in-law was able to find that information about the other triploidy pregnancies.
    Love you guys, Cassidi Stewart

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  3. After some complications with one of my pregnancies that resulted in my son having cerebral palsy I was thrust into a new community of parents who were all too familiar with 20 wk appointments that didn't end with a trip to Gymboree to buy Baby Girl or Baby Boy's take home outfit. One of my dearest friends from my mother's support group, Liz, related to me her experience when she and her husband Mark found out their sweet baby Anna had anencephaly. She hated well meaning strangers who'd ask her in her 37th week if she could hardly wait to "pop that baby out." She wanted to scream "NO! Anna is safe and alive inside of me and delivering her will kill her! " When Liz did deliver, the pediatrician gently laid Anna in her arms where she took a few breaths and quietly returned to Heavenly Father. Mark then took Anna to the nursery like he had with their other two children and bathed and swaddled her. A short time later they left the hospital with Anna in her infant seat so her siblings could meet their little sister. Anna's picture with her brother and sister is displayed in their home to this day. It's beautiful. I'm not saying that doing this will make it this any easier for you but I'm moved by your perspective and hope you will find a way celebrate and remember Rose's time with your family. Another mother I know through the disability blogging world lost a her baby and her son's twin following complications of a premature birth. She posted about an organization called "Now I Lay Me Down to Sleep" that you might consider looking at. Her post is found here:
    http://ineverimagined.blogspot.com/2012/09/nilmdts.html
    The organization is found at: www.nowilaymedowntosleep.org
    My thoughts and prayers are with you and your family, little Ashely Rose-- now a grown woman and a mother, I can hardly believe it.

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  4. Heavenly Father really is aware of us. Even when His plan is different than ours, it seems like He does all He can to help us see His plan, and to help us have hope. We keep praying for you and will now add little Rose by name. I just listened to Elder Uchtdorf's talk today from last conference, about how we resist endings because we are made of the stuff of eternity. He said that really what we have are everlasting beginnings, and that's what I feel you are focusing on. Your beginning with Rose is not what you expected, and there will be an interruption in your time together, but it is eternal and you will be with her forever. You guys are amazing and I love you so much!

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