‘He wanted me to get a second opinion. ‘Is it a boy or a girl?,’ I frantically asked. ‘Are you sure you want to know?’ ‘Yes, please tell me.’ ‘A boy, it’s a boy.’ Things like this don’t happen to people my age.’

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“In July 2016 our worlds changed. We had four little boys. Our youngest was 10 weeks old and we were very much surprised to learn I was pregnant. Four boys already, could it be, that we would have a daughter? Or did God have another boy in store for our family? My husband and I weren’t a perfect couple. He was active duty Air Force, and we lived at Whiteman AFB in Missouri. We were 13-14 hours away from home. With it being our fifth, we decided to keep the news to ourselves for a while.

Courtesy of Mandy Flippen

As the pregnancy progressed though, something felt odd. No morning sickness, I was exhausted from already being a boy mom of four with a 4-month-old with chronic ear pain and silent reflux. I tried passing the odd feeling under the rug, but I couldn’t help but feel I was going to have a missed miscarriage. I let my doctor know my concerns and asked if we could do the first trimester screening, because I wanted to see my sweet little baby on screen to give me reassurance that everything was actually okay. He informed me most of his patients don’t do that screening but if I wanted, he would agree to send me out for it.

Courtesy of Mandy Flippen

I was under midwives for my other pregnancies but switched it up to a very well known Christian doctor this time. I wanted that Godly influence this pregnancy, with it being my fifth. So, I went up to Lee’s Summit to the specialist, and went alone, my husband had to work. Everything was okay, everything was going to be okay, he didn’t need to come, I’d update him that afternoon. I was 12 weeks and 4 days and when I heard a heart beating, my anxiety eased, but then it came right back when the tech got really quiet and stopped talking. I knew something wasn’t right. She told me the doctor would be coming back in, and not to clean the goo off my belly. So, I waited….for what felt like forever…waited…

The doctor came in, started scanning me and was looking, so I started really paying attention to the things she was measuring and looking at. She finally had me look and explained the baby has extra fluid around the head, heart, neck and rump. Babies that have this amount of extra fluid usually have some sort of chromosomal issues – I thought to myself, ‘Wait, didn’t the genetic counselor just sit down with me and told me my chances for most any problems were .1%? Or some low percentage like that? How can this be happening? I have four normal, healthy, crazy boys. This can’t be happening.’

I tried so hard to not tear up, but when you hear something is possibly wrong, you can’t help but go into mama bear mode and feel like your cub is helpless and you need to help. They sat me down with the genetic counselor again and she went over my options. I could abort, do a CVS test, wait until I’m 16 weeks and do an amnio, or do a simple blood test and go from there. The CVS seemed too invasive, I didn’t like the risks of a miscarriage, I didn’t like the risks of an amnio, and abortion was never ever on the table for us, we believe babies are a gift from God and we also believe God has a plan for our lives, which I began to cling to from that day forward. I decided to do the simple blood test. It would show markers for the baby but it wouldn’t give us an official diagnosis.

I remember like it was yesterday being at the base clinic with our youngest, getting a phone call with the blood results. She was so monotoned. I recall her saying, ‘Your baby is showing markers for Trisomy 13, I’m sorry Mrs. Flippen.’ Trisomy 13 is an extra 13th chromosome. How’s this possible, how’d this happen… but none of that came out of my mouth. ‘What’s the baby? Is it a boy or a girl?,’ I frantically asked. She replied, ‘Are you sure you want to know?’ ‘

Well, yes, please tell me what I’m having.’

‘A boy, it’s a boy.’

I laugh, and I mouth the word ‘BOY’ to my husband. He smiles and then God gives me his name, with my eyes closed. Ezrah Andrew comes across my face, and I ask God, ‘Andrew? That’s Matthews middle name, we have made sure to not use family names,’ but he made sure to keep that name on my heart. We go into the room for my youngest to get him seen and I tell my husband of this amazing name and he smiles, and agrees. No fuss, no fight, simple, it was done.

My amazing doctor back in Warrensburg was stunned to find out this information to blood test results, the ultrasound findings and set me up with Children’s Mercy. He wanted me to get a second opinion. He said, ‘things like this don’t happen to people my age.’ Y’all, I was only 26 when all this happened, and my husband was only 30. So, we waited for our specialist appointment, again, but this time we go together. At the end of September we go see our sweet boy again. Not knowing what we will see, how it will turn out, we pray. I pray that God helps calm me. My anxiety with just driving up there was super high, I don’t like big cities, but going to a super high risk doctor was also scary. I was 15 weeks, and we go into the most amazing ultrasound tech. She was so sweet, talked to us normally, she even talked to Ezrah at that appointment. Although they couldn’t officially diagnosis him with Trisomy 13, all the findings from the ultrasound lined up with Trisomy 13 babies. We saw his bilateral cleft lip, which honestly looked like a curled-up Elvis lip, to me at least.

Courtesy of Mandy Flippen

We decided after that to go to Children’s Mercy once a month to watch Ezrah grow and develop. Eventually my care was transferred from my local OB to Children’s Mercy, once it was determined I was eligible to deliver there. At 16 weeks we decided it was time to announce this sweet baby and let others know what was going on. A sweet friend, Riley with Oh My Memories blessed us with an amazing photo session to do the announcing.

Riley Miller/Oh My Memories

Week after week we prayed, but not for God to lift this from us, but for God to help us grow during this time. We wanted to grow spiritually and learn more about this chromosomal syndrome. He gave us a community of people online to talk too, and although my anxiety and depression grew stronger each day, God never left my side. I clung to my scripture and a song by Hillary Scott, ‘Thy Will Be Done.’ Around 31 weeks Ezrah’s growth started to slow down, which is common in these babies, but one thing about him that wasn’t truly common, is that his heart seemed perfectly fine. We had an Echocardiogram performed and the only thing they spotted was that his heart was tilted. No holes, no valve problems, not too small, that alone was a miracle and had all the doctors talking about how rare and uncommon he was. We found all the blessings we could in this.

In my 30th week I was blessed to be carrying such a beautiful creation of God. I reminded myself all the time of how amazing he was. He might have been different, but every kick I felt reminded me of how awesome God is. Each week was a celebration. I made it this far. He’s now bigger, stronger! At 33 weeks my beautiful friend, whom I consider to be a sister, blessed my husband and our boys with a maternity photo session. Rosi, with Rose Lee Photography, gave me memories that I’ll always cherish.

Rosi Buretz/Rose Lee Photography
Rosi Buretz/Rose Lee Photography
Rosi Buretz/Rose Lee Photography

The plan for his birth was for me to stay at the Ronald McDonald house for during my 38th week and deliver at 39 weeks, because the overall goal was a live birth. I remember going to the RMD house on March 11th, and it snowing. It was like God giving me a peaceful sign that He was in control. Snow is always a sign of peace for me. March 16th was supposed to be my last appointment. My husband came up, we had plans to eat a late breakfast, and spend some time together before he drove all the way back to Whiteman to have a night with the kids. That week our pastor even brought over two tubs of ice cream and milk for Matthew and the boys so they could have ice cream or milkshakes. Our church family in Missouri made sure we were taken care of and truly blessed us during this hard time. I knew without a shadow of a doubt they were constantly praying for us and always seemed interested in Ezrah’s development and growth.

That morning for our appointment, something felt off. Our usual ultrasound tech wasn’t there, we didn’t go into the same room we usually went into, and that day, Ezrah didn’t pass his Biophysical Profile. My fluid levels had dropped drastically, and Ezrah wasn’t moving much, and he wasn’t having the accelerations he should have been having. The doctor came in and informed us we needed to go over to Labor and Delivery to start induction, then. I recall my mouth dropping. I said, ‘We can’t do that right now. We have four kids that need people to watch them, family isn’t coming in until next week, when the planned induction was set.’ I was crying. We didn’t know what we were going to do, but we knew that praying was the right way to calm down and that God would guide our steps. We drove all the way back down to the base to set up overnight care for the kids. My friend Jessica took two of my kids, a sweet friend Ashley from church took my other two, and then the next day another friend from church said she would take all four of the boys and would keep them until family got in. This really showed us how our military family and our church family was. God blessed us with such a great group of people.

We got back to the hospital around 6-7 p.m. Induction started. It lasted overnight into the next day. The next day was St. Patrick’s Day. It never occurred to us it was until after he was born. One of our deacons and our pastor joined us for most of the day and a mommy from a previous mommy group I was in came up to see me and give me a few things. His labor was the most calming labor I ever experienced. I decided to get an epidural so I could remain calm and remember things. I was ready to push with my water never breaking. The doctor decided to break it before I pushed him out, because he didn’t want a huge mess, which I understood. My amazing sister was there to capture his whole birth. Ezrah Andrew was born March 17, 2017, at 5:14 p.m., 6lbs 3oz with 12 fingers and 10 toes. Ezrah caught me off guard with crying and breathing all on his own as he entered the world. Ezrah’s eyes were slanted and his ears were off set. Ezrah loved looking at his daddy and opened his beautiful blue eyes for him almost every time he held him. We did a brain scan on him once he was born, and it confirmed he was missing tissue in the front part of his brain. It confirmed his holoprosencephaly, meaning his brain did not separate into two hemispheres.

Rosi Buretz/Rose Lee Photography
Courtesy of Mandy Flippen
Rosi Buretz/Rose Lee Photography

About 9 hours after he was born, Ezrah aspirated. The NICU had him because he was doing so well, he was drinking from a cleft bottle. Once he aspirated though, we were taken to his NICU bed. You could tell once you turned the corner which bed was his because he had about 4-5 doctors around it. They had him bagged, his heartbeat was really low, and his color was so pale. We held him and carried him back to our room. I was crying, it had only been a few hours in my mind, this wasn’t long enough. We hadn’t read to him, sang to him, we haven’t prayed with him, we hadn’t had enough time with him, so we started doing those things, and oddly enough, his color started to come back and his breathing seemed normal. The nurse came in and said his stats were amazing so we kept him with us, and I laid in my bed with my husband’s recliner chair beside it while he napped with Ezrah and I watched and listened for every sound.

I didn’t sleep. Every time I would doze off, he’d squeak or make a sound and I’d be terrified he would be dying again. My in-laws had been notified that early morning/late night and they got on the road as early as they could. The next morning, our pastor and his wife came up to the hospital and got to meet Ezrah alive and well. They adored him, and it was so great for someone to see him the way we saw him, perfect. My best friend, Amber, came to see my sweet Ezrah, and got to meet him alive and well. She held that sweet baby and loved on him so much. It made my heart melt. Then, Athena, our church friend brought our boys up to see him. My 4-year- old at the time came in, happy and looking in his baby cot to see if Ezrah was there. Our youngest wasn’t even 11 months old at the time, but he would say ‘baby’ constantly. But once my oldest, who was 6 at the time, saw Ezrah and saw his clef lip – fear set in, and set in fast. He was scared. He thought Ezrah was in pain and thought Ezrah looked too different from him. He loved him dearly and we were able to address it later, but seeing my son afraid of his baby brother is something I’ll never forget. My 2-year-old was just excited to see mommy and know that I was okay, which was so sweet. My friend was able to get our one and only family shot for us, and it’s a picture I’ll cherish forever.

Courtesy of Mandy Flippen

We had the boys leave due to Ezrah quickly passing. I remember Amber and I not knowing what to do, or think, while he was taking his last few breaths. She was holding him, and I believe it’s something she’ll remember forever. Feeling his body jerk and seeing his color quickly go from his beautiful pink to a pale/grey color is an image you just will not forget. Since my in-laws were on the way, we decided to wait to inform them until they got to the parking lot. They had already endured one grandson going to be with Jesus literally two years prior, same month, just about two weeks apart. We didn’t want them to break down on the drive from Georgia to Missouri. While we waited for them to arrive, we were able to use this amazing thing called a Cuddle Cot (donated by Amy Balentine, who I met before Ezrah was born because her second son was born with Full Trisomy 13 as well). It kept Ezrah cold and kept him from deteriorating so we could have more time with him, and so my in-laws could meet him. While we waited we got molds of his tiny hands and his feet. Precious keepsakes to have forever. My friend and photographer, Riley, was able to come back about an hour before my in-laws showed up and got pictures of Matthew, Ezrah and myself and all our keepsakes. She was able to talk to me and help me to realize what truly had happened. My mind was still in shock, and she was able to capture true emotions I’ll be able to have forever.

Riley Miller/Oh My Memories
Riley Miller/Oh My Memories
Courtesy of Mandy Flippen

Once my in-laws arrived, my husband rushed down to inform them. I recall apologizing over and over to them, I couldn’t help but feel somewhat guilty that Ezrah died, especially in the moment. I hated that they had to experience this, two years later from the first grandson they lost. They adored him though. They oved seeing his 12 fingers, his precious cleft, his tiny head with his precious hair, and his incredibly soft skin. They were able to stay for a week once we got home from the hospital and loved on Ezrah’s brothers and were such a big help.

I decided to have Ezrah cremated so he can be with me wherever I go. Emotionally I couldn’t handle a service or a memorial to begin with, so we decided to inform others about his condition. We decided to post on Ezrah’s Facebook page about grief, about loss, about Trisomy, and updates on our family. For his first birthday we did a balloon release and invited everyone we could. We asked others to celebrate the 19 hours he did live. To celebrate how Christ has blessed our family for allowing us to see the beauty in the storm. We had a wonderful turnout with several friends, my photographer friends, friends from an hour away came, and we released about 50 balloons.

Rosi Buretz/Rose Lee Photography
Rosi Buretz/Rose Lee Photography
Rosi Buretz/Rose Lee Photography
Rosi Buretz/Rose Lee Photography

Ezrah’s story inspires other moms with any trisomy, chromosomal disorders. I hope to show others that God loves us even when we get this kind of diagnosis, that others can see it’s not a true death sentence. I know moms whose babies have lived for 8 weeks, 3 months, even a year and longer. These babies are wonderful and so special, and we can learn to celebrate every moment, rather than complain when something goes wrong.”

Megan Nutter/Lil’ Lemon Photography
Megan Nutter/Lil’ Lemon Photography
Megan Nutter/Lil’ Lemon Photography
 

This story was submitted to Love What Matters by Mandy Flippen of Bonaire, Georgia. You can learn more about Ezrah’s journey with Trisomy 13 here. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories.

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