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March 13: Trisomy 13 Awareness Day

To our son Kanaan Asher Joseph. We love you dearly and cannot wait to meet again in heaven together. We will give you the biggest hug, and squeeze, and the sweetest kiss.

In this post, David and I will share both of our experiences on this journey of being parents to babies gone too soon. This is not a victim mindset post. This is real, raw truth about our experience and what our journey has been like up to this point. We will also go into what Trisomy 13 is. The month of March is Trisomy awareness month with the 13th being Trisomy 13 day. "When you are sorrowful look again into your heart, and you shall see that in truth you are weeping for that which has been your delight."

First, What Is Trisomy 13? Trisomy 13, also known as Patau syndrome and trisomy D, is the third most common fetal aneuploidy, after trisomy 21 (Down syndrome) and trisomy 18. Trisomy 13 is the condition of having three copies, rather than two, of chromosome 13. Trisomy 13 can be full, mosaic, or partial. Trisomy 13 has an approximate incidence rate of 1 in 5,000 births. "Trisomy 13 is a type of chromosome disorder characterized by having 3 copies of chromosome 13 in cells of the body, instead of the usual 2 copies. In some people, only a portion of cells contains the extra chromosome 13 (called mosaic trisomy 13), whereas other cells contain the normal chromosome pair. Trisomy 13 causes severe intellectual disability and many physical abnormalities, such as congenital heart defects; brain or spinal cord abnormalities; very small or poorly developed eyes (microphthalmia); extra fingers or toes; cleft lip with or without cleft palate; and weak muscle tone (hypotonia). Most cases are not inherited and result from a random error during the formation of eggs or sperm in healthy parents. Trisomy 13 is diagnosed based on the symptoms, clinical exam, and confirmed by the results of a chromosome test. Due to various life-threatening medical problems, many infants with trisomy 13 do not survive past the first days or weeks of life." (Taken from Trisomy 13 has a high rate of miscarriage. It is almost always fatal in the perinatal period, with nearly 80% of babies dying before one month of life. The median life expectancy for a baby born with trisomy 13 is 7 to 10 days. The babies who do survive pass the first month of life have medical complications like difficulty feeding and breathing, reflux, slow growth, seizures, high blood pressure, and severe developmental delays.

Our Story-From Melody's perspective: We had chose to not do any of the chromosomal testing in the beginning of our pregnancy as everything was going well and we didn't feel the need to. We unfortunately were unaware of Kanaan's condition until the end because we didn't do any testing that would have showed us he had it. I honestly had the best pregnancy. I never had morning sickness and very rare aches or pains. It seemed super-natural really. I had finally had a dream come true (in my mind) and I could not wait to finally have a child on this side of eternity. I am a planner so we had everything basically ready for him. I honestly couldn't wait to be home all the time with my son and just enjoy that season of life and being a stay at home mom. It was dream. We had made so many plans in our minds about what the next year would look like and all the adventures we would go on, whether big or small. I would finally get to be apart of the group of parents going through life taking care of kids and learning all the things that go with it. I had no worry or doubt in my mind until the day we got the call after my 34 week appointment. I was numb. Crushed. It felt like I was in a nightmare. It didn't even feel real. Did I really just hear that my baby had so many issues that he wouldn't survive? I just couldn't believe it. I didn't know what to say or what to do. At that time we were at one of our favorite restaurants and I immediately felt like throwing up and lost my appetite before I even began eating. I had to leave immediately because I was about to burst into tears. We left, cancelled our other appointment, and headed home. It was so confusing to even explain to our families what was going on as we didn't fully understand ourselves at the time.

Like David said, everything being told to us that week was going in one ear and out the other. We felt numb. Every time I felt Kanaan kick, I just couldn't believe that something was wrong with him. Once I had done the amniocentesis, we had to wait for results. The morning we found out we lost Kanaan was the day we delivered him and his diagnosis of full Trisomy 13 was confirmed. Way to many things to take in a day, let alone in a week. We had so many decisions to make, that no parent should ever have to. When and how would we do his funeral? How would we deliver him and where? What would my recovery look like? What would my new normal look like? What would I do? I felt like I had to be strong in the moment to make those decisions, but inside I was dying. I was so afraid, hurt, crushed, and confused. We had been praying all day long those days previous for a miracle and many were praying for us and Kanaan, to whom we are so grateful. We declared and prayed over him. What we wanted, was just not God's plan. As I write this, God is still good. It was so hard to believe that in those days and still is, but I believe he is always good and never brings evil or bad things upon us. He is the creator of good. After all the work I had done on my health, I felt so defeated that this was happening to us. There was no reasons why this happened. It happens at the moment of conception and should have never happened. The doctors kept telling us that this was a random occurrence and should never happen again. However, that didn't validate why it was happening to us right then. It's so easy to ask God "why" in these situations. I've learned since 6 months ago to start asking what to do next instead of why. I have had to and continue to give up my right to understand, so I can have the peace that surpasses all understanding. I may never know on this side of earth why this happened to us, but I know when I get to heaven I will surely not need to ask.

Meeting Kanaan & Our Birth Story That day we found out we had officially lost Kanaan, my body had experienced some contractions very early in the morning. My midwife wanted to help me go into labor but I didn't feel right about it in that moment. So I was able to go home and see if my body would go into labor. When we left there I was already 3 or 4 cm. I ate food (even though I didn't want to) and went home to rest and pack. We had decided to have a natural birth with our midwife in a birth center (just like being in the comfort of home) as long as everything progressed well. We prayed like crazy that I would be able to do this naturally. I knew that in the hospital that I would potentially be interrupted so much and might not get to spend much time with Kanaan. We were not really sure what would happen. I asked God, " In the midst of a horrible situation, will you please just give me a supernatural birth?". I have to be honest and say, that is exactly what I got. My body went into labor naturally that day and I had contractions later that afternoon and into the evening they got my intense. At this time I was not thinking about all the people I wanted to be there and meet him. I still was in shock and so confused, (I wish someone could have came along side me and helped me with that); I will be that to someone some day.

After dinner I knew I wanted to shower and get ready. After that I knew it was time to head to the birth center. We arrived in time and I continued my laboring for 2-2.5 hours. It felt like it went by fast and I didn't experience much pain till the actual delivery. That was supernatural to me. I felt prepared for labor and had no pain meds. I was so thankful God was giving me the birth I asked him for. It was emotionally and mentally so difficult. I had to concentrate on what was going on with my body physically. Of course this was different than if he would have been alive. No monitoring the baby, no checking his position, no crying when he came out, no happy tears. Near the end I almost felt like giving up but then I felt such peace in the room and God gave me a vision of my son Kanaan with him. He said "I'm okay mom, I'm with Jesus". I knew after that, that I could do it. My son came into the world in silence and we got to spend time with him. I was afraid at first to look at him as the descriptions doctors had given us for babies like this, I was not sure how I would react. We immediately were in love, but I had such sorrow at the same time. It was not fair. I wish I would got to meet him alive, but that's just not how our story with Kanaan ended. We held him and admired this beautiful hands and feet (yes he had six fingers and toes), his full head of hair (blonde and thick), his long little body. So sweet and peaceful. When I looked at his face, I saw perfection because I knew he was already whole in heaven with no deformities. After the delivery, we didn't make it home till the next morning. We were so exhausted and tired. I couldn't even think, I just fell asleep and woke up again late morning sore. I experienced all the things any other mom experiences after birth. My milk coming in, healing from stitches, tired, etc. My milk coming in was a painful reminder and I chose to not pump and endure the pain so my milk would stop with in a few weeks. I couldn't bare the thought of producing milk and not having my own baby to feed it to. I cannot tell you how thankful we are of family that brought meals, prayed, cleaned the house, and cried with us. As we planned and then had Kanaan's funeral, we had so many people come and support us. We are forever grateful. The next days and weeks and months were and have been hard. Each day is different and I know that I won't feel like I do forever, but for now in this season, I have to grieve and process the trauma that happened. Everyone's journey is different and we will never know why. There is still good in life, but I'm not sure when I will be able to laugh or smile as big, maybe not until I see my children again. That is okay, it doesn't mean that I don't have joy. It doesn't mean that I don't love God. It just means life looks different for us.

We were robbed and now we have to heal and continue to honor our son and help others who go through this. No one should ever have to bury their child, but I will be the first one to be there, to give the comfort I've received from God, and sit and cry with them. Yet I will still trust God and stand on his promises. I will declare and take my promised land (Kanaan). I will live in the land flowing with milk & honey. Every time I see a bee or honey, I'm reminded of our sweet Kanaan and the lives he has already changed and the lives he will continue to change.

Kanaan's Story- From David's perspective

I still remember the day like it was yesterday. Melody and I had went in for our 34 week appointment and check up with our midwife. The pregnancy was going very well up to this point and we virtually had zero concerns the entire way. I remember hearing our midwife say the word ‘perfect’ about most of the checks and numbers throughout our pregnancy with Kanaan. We went through all of the checks and at the very end she measured Melody’s size. Tension filled the room immediately. I could tell she was doing everything she could to have good bed side manner, but the look on her face and the words that followed pierced my heart and soul with questions, fear, and general concern. She told us that Melody was measuring small and that she was very concerned about that. We had to go in for an ultrasound immediately. The ultrasound tech was great and it was fun seeing our little guy on the screen. As far as we could tell, everything looked good, but we’re not experts at ultrasounds. We saw his heartbeat, his hands, his feet, and we got the picture to take home. In the picture, Kanaan was giving mommy and daddy a ‘thumbs up.’ The tech told us that our midwife would call us later with the results. I actually felt some relief at that appointment. Maybe she was hiding it or maybe she didn’t really know, but the tech didn’t seem concerned at all. We actually had an unrelated dentist appointment to go to that day, so Melody and I got to spend some drive time together and we stopped for lunch at a healthy spot. We ordered our food and sat down. I remember seeing our midwife’s phone call pop up on my screen. Immediately, my heart was pounding as I picked up the phone anxiously praying for good news. There was no easy way for her to say it. I could tell she didn’t want to, but I guess this is the hard part of her job – and the hardest phone call of my life. I remember hearing, “it doesn’t look good.” Four simple words that changed my life forever. She proceeded to rattle off a laundry list of issues that Kanaan had, but I didn’t even hear a word. I just knew it wasn’t good and that our son had a slim to none chance of surviving. She asked me if I could tell Melody the news and I said that I couldn’t. It was mostly because I didn’t hear most of what she said. I handed the phone to Melody. Watching her facial expressions as she heard those words was heartbreaking. Because of the abnormalities, it was explained to us that Kanaan probably had a condition called Trisomy 13. The next step was to get a level 2 ultrasound which we were able to do early the next morning. The rest of that day was hard. In fact, every day since then has been hard. I remember driving home, praying, and believing for a miracle. It was the only option at this point. It was our only hope to cling to. We had to tell our parents and families. We tried to keep it brief because we honestly didn’t know much about the condition or about what was next for us. We had lots of support and prayers from many. We went in the next day and had a level two ultrasound. I still remember that morning being a nightmare. The tech we saw that day was not very sensitive. She was just doing her job, but the list of conditions and abnormalities she kept rattling off were to much for my heart to hear. At first it was just an extra finger and an extra toe, then a cleft lip. I thought, ok that’s not so bad, I’m sure lots of people live great lives with those things. Then it was kidney issues, heart abnormalities, and the brain wasn’t fully developed. It hit us harder in that moment, that this condition was going to take our son’s life (barring a miracle). We knew in that moment that it was possible we

would not even be able to meet our living son. The level 2 all but confirmed that Kanaan had trisomy 13. To be sure, they had to do an amniocentesis to confirm the condition and to give us some insight into future pregnancies. To do this, they had to stick a needle into melody’s belly to get amniotic fluid to test. We got that done and we waited. There we sat – all of the testing was done, just waiting for the results. We had some decisions to make. Did we want to have our baby in the hospital or at the birth center like we had planned for years? We wanted to have a natural birth at the birth center, but we also understood that if there was any medical intervention that could potentially save Kanaan’s life, we wanted to do that too. Upon consulting our doctors and midwife, we decided to wait on the results of the amnio to make that decision. Essentially, if trisomy 13 was confirmed, there is no medical intervention to save a baby’s life. It is only a matter of time until they pass away. Some live for minutes, some days, I’ve heard in rare cases they can live months. Some, unfortunately for parents like us, are born sleeping. It took longer than expected to get those results back. It was a holiday weekend. September 6th, 2021 was Memorial day. Melody and I decided to do something fun and we went to a cool mini golf course together and then out for dinner. It was fun to get our minds off of the living hell we were walking through if only for a moment. I still cherish the pictures we have of that night. The three of us. Melody was beaming and beautiful and Kanaan was still moving and excited to play with us that night. I miss feeling his kicks and punches. They always reminded me of the wrestler he’d grow to be someday. Melody didn’t want to think about it or say anything, but she was feeling him move less and less during that night into the next day. The ‘kick counts’ slowed down and eventually stopped. We were standing on God’s word and honestly trying not to face the reality that our greatest nightmare was happening. We were in the middle of watching our first born son pass away in the depths of Melody’s womb. The next morning, Melody called our midwife and told her about the kick counts. She called us in right away to get a heart beat test on the doplar. We sat there in that moment holding our breath until our sweet midwife broke down with tears in her eyes as she whispered the words that no parent wants to hear, “He’s gone.” We sat there and cried together in shock, in grief, in denial. But honestly, we didn’t have time for that. Unlike other losses we’ve had with our dear Esther and Nehemiah, we had to give birth to an almost full-term baby... that was dead. We didn’t have much time because our midwife wanted to induce Melody that day. We didn’t have peace about that. We really wanted to give birth naturally. She agreed to let us go home and gave us a day to go into labor naturally. We told our families the tragic news and my family was able to bring us some supper. We were praying and believing for a supernatural birth and Melody started to have contractions. Everything happened pretty fast at that point. They intensified and got closer together. We made the decision that evening to go into the birth center. Our doula wasn’t able to make, but Melody’s sister was there to help in the process and be support for all of us. My family got to be there in the lobby too. Melody and the team did amazing. Everything did go smooth and quick. At 11:27 pm on September 7, 2021 our Kanaan Asher was born into our arms physically. His body was lifeless, but he was ours. We heard horror stories about how our baby might look with this condition to the point where we weren’t even sure if we wanted to see him that way. I’m so glad we decided to spend some time with him. We cried together as

we held him and showed him off to the family that was able to make it. We got some great pictures of him and with him. In the little time we had with him, his color started to change and he started to look a lot worse as time went on. He was beautiful and perfectly ours with a full head of hair. The time came when we had to say goodbye and the midwife took care of his body and eventually he was cremated. Our eventful night was not over however. Melody had a tear during the birth and we had to go to the hospital to get her sewn up. The procedure went well and we didn’t get back home until early the next morning. One of the worst parts about this experience is that we had to go through all of the painful things that every woman goes through in birth and in postpartum, but we had no baby to keep us going. After all of the anticipation, the showers, the nursery, the clothes – we had no use for them.

We are blessed with family and with friends that have supported us with gifts, food, cards, prayers, quality time, etc. starting that day and some are still checking in on us from time to time. We need that even to this day. As I sit here and write this, it is exactly 6 months to the day since Kanaan was born sleeping. There isn’t a moment that goes by that he isn’t in my heart and on my mind. I’ve heard it said that your pain never shrinks, you just grow around your pain. I think that is so true. The pain doesn’t go away. It will never go away until I live in eternity with Jesus and all of our children that we have yet to meet on this side of Heaven. Even writing this hurts just as much today as it did when I held Kanaan’s lifeless body in my arms. In spite of that, we are growing around our pain as we lean in on each other and mostly in on God (our rock and our comfort). This month, Melody and I have been studying the book of Habakkuk together. It is a fascinating and short book near the end of the Old Testament. Habakkuk has a lot of similarities to our story. I feel like I am living in “the middle” of the book of Habakkuk in this season. We have a promise from God that we will have healthy children on this side of eternity. We are standing on that and declaring that daily as we take communion. However, like Habakkuk, everything we see around us with our natural eyes competes with God’s word. Like him, we are asking God, “how long must we wait to see your word come to pass?” Maybe you are in a similar situation. We don’t put this out there to glorify our struggle or our pain over others’. We understand that pain is pain and that when you are in the middle of it, every giant seems insurmountable. However, we put this out there to encourage you to believe and to have faith even when you can’t see it with your natural eyes. God’s word will come to pass. In fact, in Habakkuk 2:3-4 it says,

“For the vision is yet for an appointed time; but at the end it will speak, and it will not lie. Though it tarries, wait for it; Because it will surely come, it will not tarry.”

Wait for it. Praise God in the middle of the storm. He does not want us to fight our battles on our own. I’m praying this prayer out of Habakkuk 3:2 right now in this season. Use this to plead with the Lord on your behalf as well as ours as the Holy Spirt leads.

“O Lord, revive your work in the middle (of the years)! In the midst of the years, make it known; in wrath remember mercy.”

I’m pleading with God to show up in the middle! I’m pleading for His word to come to pass. For the King of Kings to be made known powerful in our situation and family. In the middle of the mess, only God can rearrange this into a beautiful tapestry. I don’t get it. I don’t understand it. I can’t explain it. But our God is good. He has already won and His word is at stake in our story. He has never a lost battle. He’s not going to start here.

If would would like to join us in wearing Trisomy 13 colors on the 13th, they are pink (for love), green (for life), and yellow (for joy).

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