‘He’s only measuring about 2 pounds.’ Tears began streaming down my face. Something was terribly wrong.’: Woman gives birth to baby with Down syndrome, ‘He’s uniquely formed’

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“Have you ever heard that phrase, ‘I had to grow up way too fast’? Maybe you can catch a glimpse of this phrase from your childhood. Or maybe you’re not quite sure what that means, and life’s challenges didn’t hit as hard during your childhood years. Or maybe they haven’t even hit in your adult years yet. For me, this is a phrase I felt like I constantly lived by as I grew into the woman I am today.

I grew up in central Indiana in an environment that some might consider toxic. My father struggled with alcoholism. This led to countless arguments between my parents and would usually result in physical harm. Waking up hearing my mother’s scream and plates smashing sent me into complete terror. It would for any child.

Courtesy of Brooke Loden

My parent’s relationship was always the focus, and the results of this led to constant moving and separation between them, eventually leading to a legal divorce. When I was about 13 years old, my dad was diagnosed with terminal brain cancer. My 13-year-old self didn’t know how to process this or respond. He passed away quickly, in a couple of months. My mother then struggled with alcoholism. My older brother struggled with drug addiction and went off to a hope house. And it was just my younger brother and me. My family was always broken, but now it was really broken.

Courtesy of Brooke Loden

Around this time, I really started to question my faith and wonder where my dad was. Was eternity actually real? What did the Bible have to say about it? What does the Bible have to say about my existence and purpose on earth? Seeing my father die before my eyes led me to realize how quickly we can lose breath… and then become a vapor.

I began studying the Bible and meeting with a sweet woman who helped me read and understand the Bible better. I began to grow, having so much passion for my newfound relationship with Jesus. It truly allowed me to grow through my heartache and helped me navigate a response to my brokenness. My passion for sharing the newfound faith I was experiencing led me on a 3-month mission trip to Africa. I graduated high school a semester early and spent those months serving in Uganda, Africa.

Courtesy of Brooke Loden

When I came home, I decided to move to Texas where my dad’s side of the family primarily lives. I moved in with my Meme and began online schooling to study Christian Ministries. I worked at Starbucks at the time and was also pursuing a relationship with a guy I had met the summer of my sophomore year in high school at a church camp in Texas. We began talking months before I moved from Indiana to Texas and started dating after 8 months of long-distance communication getting to know each other. Little did we know my Meme’s house was only about an hour from where he lived! In our free time, we would commute to see each other and go on dates. We began to get serious, and our passions and dreams for life were aligning so well. Elijah proposed to me on a backpacking trip in the mountains of New Mexico, and I said YES! It was absolutely beautiful, and a complete surprise. We dated for a year and 3 months, then had a 5-month engagement. Our wedding date was December 15, 2018.

Courtesy of Brooke Loden

With both of our spontaneous and adventurous personalities, we thought it would be a great idea financially to spend our first couple of years living in a camper on his parent’s property. So, that’s exactly what we did! Until we had an unexpected surprise about 6 months into our first year of marriage.

Fallon Michael

We were pregnant! We both knew we wanted to start our family soon, within the first 2 years of marriage for sure, but not THIS soon. It hit us both emotionally as we processed, but those emotions of grief quickly turned to joy and excitement knowing God had something amazing planned through this. We decided we could totally have a baby in this camper. It was a 40-foot long fifth wheel, and there was plenty of space for a crib. I had no idea what the future would hold. Part of me liked the adventure, and the other part of me was so eager to know just how the future would unfold.

Nathanael Loden

One concern I had throughout my pregnancy was I couldn’t feel the baby kick a lot. I would mention this to my OBGYN, and she informed me it was okay because my placenta was in the front of my tummy, likely blocking a lot of the movement. I felt assured by this, but looking back, I wish I would have expressed a concern to make sure the baby was healthy. Every baby appointment left me confident and feeling like I was having such a healthy and successful pregnancy.

Nathanael Loden

It was my 35-week ultrasound to check and see if the baby was in position for labor for the following month. I was SO excited to see the baby on the monitor, and Elijah and I decided to bring his mom along with us to share the excitement. There we were in the ultrasound room, but the OB was awfully quiet. I remember asking, ‘How’s he looking?’ and her responding, ‘Well, he’s looking kind of small so I’m just going to remeasure a couple of times.’ I asked, ‘How small?’ As everything within me froze, she said, ‘He should be about 5 pounds at this age, but is only measuring to about 2 pounds.’ Tears immediately began streaming down my face. I knew something was terribly wrong. Especially after hearing, ‘Would you like me to call an ambulance, or can you rush yourselves over to the hospital in North Austin?’ I said, ‘Um, we’ll hurry.’ Not wanting to add any more trauma to this experience.

Courtesy of Brooke Loden

My mother-in-law drove as we all sat quietly, processing, and preparing for the worse. I was preparing for an emergency c-section, but my OB gave orders for a more in-depth ultrasound of the baby’s heart. We spent that night in the hospital awaiting results to be read by the cardiologist. The following morning couldn’t have come sooner. The entire night, I would wake up to the baby’s heart monitor alarming the nurse, and her rushing in to check on the baby’s heart rhythms. Eventually that night, I was met by the on-call OB who informed me the baby was having dips with his heart rate called ‘prolongs.’ This is where the heart would dip down and not come back up for nearly 4 minutes. The doctor had informed us if the baby had one more prolong, they would need to go in for an emergency C-section. It was all so much to process, but I was ready and willing to do whatever it took to make sure this baby would survive.

Courtesy of Brooke Loden

We were told on the first night there would be no way we could deliver this baby vaginally. He was too small and would not survive the exertion of pushing. The goal was to keep me hospitalized and pregnant for as long as possible, giving us an expected week of being monitored in the hospital. I knew we probably wouldn’t make a full week. It was the morning of day two, and we were informed the baby had a hole in his heart. Along with the hole, it was looking like there would be an arch in his heart that probably wouldn’t be sufficient to function on its own. The information was shocking and again, I was unable to process it. I was in fight or flight mode for this child, and ultimately trusting in the one who gave us this life in the first place. If God has the power to give this life, then He surely has the power to save it.

The baby had another prolong, and we were told, ‘Prepare for surgery.’ The nurses explained because of the baby’s heart, they would need to immediately take him to the NICU to evaluate and keep him safe. This broke me, but I was game on. They were wheeling me into the operating room. I vividly remember feeling as though I had been given some sort of drug. I knew they hadn’t, but it must have been the amount of shock I was in. 3 days ago, I was out jogging and my pregnancy was completely healthy. Now I am being wheeling into a surgery room with my 2-pound baby who should be 5 pounds, and also has two heart defects.

First step: spinal block. They inserted the needle in my back and laid me down, bringing my feet onto the operating table. I couldn’t feel anything below my chest. Elijah was allowed into the room, and we instantly locked hands. I was shivering and shaking uncontrollably as a result of the spinal block. I remember feeling a lot of tugging and looking over at Elijah to read his face. He looked at me and said ‘You’re okay, you’re okay!’ I knew he was seeing something that didn’t seem okay. The baby was breech and super small, making it very difficult for the surgeon to get ahold of him. Time was of the essence for our baby’s life, so the surgeon decided he needed to make an additional incision vertically in my uterus to better reach the baby. This means only c-sections from here on out because of the probability of my uterus rupturing, which leads to immediate death for the mother, and usually the baby as well.

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Suddenly, we heard the tiniest and weakest cry we had ever heard. Judah Charles Loden was born at 12:30 p.m. on February 22, 2020. Elijah rushed over to the table to see our baby. I laid there as I counted 25 staples. I could only barely see what they were doing, but I knew it was vital. They hooked Judah up to oxygen and a monitor, brushed his cheek against mine, and took him to the NICU. Elijah followed the nurses and the baby, as I was taken to a recovery room. Left there, alone with my thoughts, I prayed and prayed. Elijah came back to meet me about 40 minutes later and said, ‘Babe, the nurses think he probably has a genetic disorder. Maybe Down syndrome.’ There aren’t words to explain how heartbroken I was at the sound of those words. I cried and cried, realizing this is not something you can ‘fix’ like a heart. This is a lifestyle set apart from most. I didn’t feel cut out for this, nor did I feel like I signed up for this.

Courtesy of Brooke Loden

I was taken to the postpartum unit, and everything was slow motion as I saw other mothers with their new babies, balloons, and fun decorations as I was wheeled in… weeping without mine. After just 4 hours, Judah was taken to a children’s hospital nearby to be taken care of by their more advanced NICU staff. It wasn’t until after day three I could be discharged to go see Judah. During those long days and nights, we would get calls from the NICU updating us. We were also informed Judah’s tummy was extremely distended and might require emergency surgery. I knew there was no way he would survive that kind of trauma as little as he was. The night we were told the news, Elijah and I prayed and thanked God for Judah. We knew what was a surprise to us was never a surprise to God. That if He only wanted for us to carry this child, then we were okay with that. ‘Whatever might bring you the most glory, Lord.’ This was our prayer as we surrendered Judah, not into the hands of surgeons, or doctors, or nurses, but into the hands of the almighty and powerful God who created surgeons, doctors, and nurses’ hands.

Courtesy of Brooke Loden

When we had prayed for Judah during pregnancy, we had prayed he would carry his name and live it out in his life. Judah was a man in the Bible who led the tribe of Judah, from which Jesus came. Judah was a unique leader set aside from the rest. This is what we prayed. That our son would be unique and set apart for God’s kingdom. Little did we know God would answer this in such a way.

I remember thinking to myself, ‘Is it wrong to hope the genetic test comes back negative?’ I knew I would love him regardless, but I wanted what I thought would be best for my son’s life. Down syndrome didn’t seem best! One night, I was visiting Judah, and a nurse popped her head in and said quickly, with no sense of weight to the words she was about to say, ‘Test came back positive!’ I asked, ‘You mean the genetic test?’ She responded as she realized I broke down into tears, ‘Yes, the nurses said you wouldn’t be surprised.’ The truth hit like a truck, and I began to grieve the reality of the unknown for my son. Judah spent 3 long months in the hospital fighting for his life. We were finally able to take him home and call him ours at the end of May. He had his first heart surgery in April and soon after, an open-heart surgery in July.

Courtesy of Brooke Loden

Adjusting to this new normal with multiple doctors’ appointments every week, therapies, and things like medical equipment has been a whirlwind. It’s like getting on an airplane with a ticket to Florida, but you land in the Arctic. Becoming a new mother, in general, is difficult for anyone. Becoming a new mother of an unexpected special needs child, toppled with heart surgeries, is a whole new level of difficult. Not to mention I was pumping for 30 minutes every 3 hours for 7 months straight in the midst of all of this. Yes, even in the middle of the night. I knew breast milk was what Judah needed to thrive.

Courtesy of Brooke Loden

Ever since Judah was born, we have primarily spent our time with doctors, and taking it day by day. Some seasons he cannot hold food down, so we have to use trial and error with types of milk, run tests, get ultrasounds, the whole nine yards. We go to physical, occupational, and speech therapy to help him catch up and build his muscle tone. He has faced tremendous mountains that have caused physical development to become delayed. Yet, we are seeing amazing progress with his development.

Courtesy of Brooke Loden

During Judah’s hospital days, I struggled a lot with envying the nurses who could care for Judah. I wanted so badly to be the one to care for my newborn baby! But I knew they had to be the ones. When taking him home, it was still as though we didn’t really know this baby. It took about a month until I truly felt like I was his mom. I cannot even list the number of appointments we have been to. For months, I would wake up to doctors calling me to schedule follow-up appointments. I was so sick of feeling like doctors were ruling our life, and taking these precious moments of the baby stage away from me. Why couldn’t I just enjoy my baby? I had waited for 3 months to take home. I knew Judah needed medical help. As hard as it was to answer those phone calls I knew would be filling my schedule with more appointments, I knew it was best for Judah.

Courtesy of Brooke Loden

Although it’s been an incredibly challenging year for us, we have had amazing peace through it all. We have not stayed in the mindset of fear or worry. We have trusted God every step of the way and have only been able to be strong because we have been doing it through His strength. We have been so incredibly weak, which makes it all the more evident He has shown His strength through us as we cling to Him.

Courtesy of Brooke Loden

There are so many unknowns about having a child with special needs. So many questions you flip through in your head, and try to make out an answer so you can best prepare for the future. Yet we’ve already learned every child is different. Special needs or not. There is such a spectrum for Down syndrome, and the only way to know is to watch as he grows. Part of this is how I raise him and what opportunities I present him. The other part is solely based on how God has uniquely formed him.

This was not the journey we were expecting to face with our first child, nor at just the age of 21 and in our second year of marriage. But what we do know is, through all of life’s unexpected surprises, they are not surprises to our God, nor are they coincidences. They are absolutely and 100% sovereignly planned for our good, and for God’s glory.”

Courtesy of Brooke Loden

This story was submitted to Love What Matters by Brooke Loden. You can follow her journey on Instagram or Facebook. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful perspectives from special needs moms:

I’m sorry your child has Down syndrome.’ Sorry is the last thing we feel. It’s impossible to imagine life without her.’: Teenager with Down syndrome becomes dancer, model, ‘She’s the best of us’

‘Aren’t you going to tell me congratulations?’ She wanted me to cry, but she wasn’t going to break me.’: Mom becomes Down syndrome advocate, ‘This is HIS journey’

‘But it doesn’t run in our family!’ I’m too young for this. Is it really happening twice?’: Brother with Down syndrome helps parents accept son’s diagnosis, ‘We had so much hope because of him’

‘There’s a 92% chance.’ I had NO IDEA if we could handle it. But when we saw his almond-shaped eyes, our hearts were stolen.’: Mom births son with Down syndrome, ‘We are truly blessed’

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