‘Do you want to hold her?’ My husband cradled her in his arms, weeping. ‘I just love her so much.’ My lungs burned as I gasped for air.’: Parents lose daughter to Anencephaly, ‘My husband fell to his knees’

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“I shifted my weight in the oversized office chair as I studied the candid family photos on the wall. I’ve been here before… five times to be exact. Five times I have sat in this same chair studying the same family pictures sparsely hung on the wall in the office. I expected this to be a routine visit, one we’ve done before time and time again; discussing genetics, insurance, and everything in between. This was an appointment typically conducted by the nurse practitioner, so I was surprised when Dr. Chan walked through the door. She greeted me like she always does; large smile, big hugs, and catching up on life and kids. She feels more like a friend than my doctor after 7 years of pregnancy appointments.

Her mood and expression deepened as she opened my file and lifted out the ultrasound images. As she began explaining what she saw I sunk into a dark familiar place, but this time it was heavier. She kept talking, her voice faded from my head as I locked my gaze onto the precious ultrasound photo she held in her hands. Through the muffled words I snapped back to attention when I heard her say, ‘I’m so sorry Rachel, but this condition is not compatible with life…’

I melted deep into the chair as I asked her to repeat what she just said. I needed further explanation, assuming I misunderstood or that there was some kind of mistake. I couldn’t believe what she was telling me. I DIDN’T believe what she was telling me. I was waiting for her to say, ‘This is how we fix it…,’ but she never did. She couldn’t. My body began to burn with fire. My cheeks flooded blood red with fear and my heart began pounding like it was begging to jump through my chest. I didn’t believe it. I couldn’t believe it.

Courtesy of Rachel Jacobus

She held my hand and apologized over and over as tears welled in my eyes. I pulled out my phone and asked to call my husband who was at home with our two kids. He didn’t come because this was supposed to be a conversation about testing, insurance, easy boring stuff… not a conversation about our baby not being compatible with life.

My hands shook as the phone rang…

‘Hey babe…?’ Jared said questionably as he knew I was in the middle of an appointment.

I couldn’t speak…his voice broke me. I began weeping as the reality of the situation hit me. How was I supposed to tell my best friend, my husband, that our sweet baby wasn’t going to live after she was born?

‘Jared…’ I cried, wishing he was here to hold me. Wishing I didn’t have to make that call.

I couldn’t get anything else out, I tried. I fought for words, but they wouldn’t come.

‘Hi Jared, it’s Dr. Chan…’ the doctor gently slid the phone from my hands across the table to give him the news. He sadly acknowledged her diagnosis with very little response as I sat alone on the other side of the table, crushed and devastated. Oh how I wish he would have been there to hold me and comfort me.

Courtesy of Rachel Jacobus

The longest 24 hours of our lives has been waiting until we could get in to see our specialist. Thankfully, we were able to see the same high-risk doctor that helped us with our other two sons. The technician performed the ultrasound in the quietest room I think I’d ever been in. No one said a word. I saw there would be times she would measure something, and I asked what it was she was measuring because it never made any sounds. ‘This measures the heartbeat,’ she said carefully. ‘…Do you want to hear it?’ Her face saddened and hesitant… By her phrasing I knew she was trying to protect us. She played the heartbeat and I began sobbing as we heard the thump, thump, thump project through the speakers. I grabbed my face and placed my hand over my heart being sure it was about to stop. She gently squeezed my leg and offered her support in the best way that she could. She excused herself and told us the doctor would be in shortly to talk with us. I sat on the bed and Jared sat next to me grasping my shaking hands. It was eerily quiet as it seemed to take forever for the doctor to walk in.

When the doctor came into the room, I could tell right away she had bad news. We both tried awkwardly starting our conversation pleasantly, but we both knew we were only prolonging the inevitable. She explained to us that she was seeing the same things that our OB saw and it was confirmed; this sweet baby has Acrania/Anencephaly. A neural tube defect where the cranium doesn’t fully close, which leaves the brain to be exposed to amniotic fluid.

Over the next few hours, she allowed us to cry and ask an endless amount of questions as far as what our options looked like moving forward…

  1. Terminate the pregnancy.
  2. Carry baby until full term, deliver, spend very little time with baby, and have a funeral and burial service.

I can hardly even type those words out…

Funeral and burial service…

There would be no nursery to setup, no clothes to wash, no car seat to prepare, no diapers to buy. No. We would deliver this baby and leave the hospital with empty hands and heavy hearts.

With an outpouring of women who experienced this same thing (different diagnosis’, same outcome) who surrounded us in love and stories and prayer, we faithfully decided to continue carrying this sweet and precious child until God called her home in the womb, or we entered into a sacred space of being able to place our baby back into the arms of Christ. What an incredible experience… to be wrapped up safely and snuggly in the womb of mama, hearing her heartbeat, feeling her rocking, swaying, reading, talking, singing, then to fall peacefully asleep and wake up in the cradled arms of Christ?

At 13 weeks we decided to do a blood draw to find out the gender in case sweet baby decided to go Home before we got to see on an ultrasound. The ladies at our doctor’s office decorated a beautiful piece of paper and enclosed confetti inside for us to open privately. We actually waited a couple of days prolonging the heartache…

Courtesy of Rachel Jacobus

Here is a sweet letter written by Jared after we opened the gender envelope:

‘I’ve always wanted a girl. I have seen many fathers walking their daughter down the aisle of their wedding and have ever since wanted that for myself. Even before we were ready for children, I always knew I wanted a daughter. We’ve never had an easy pregnancy. Whether it’s a miscarriage, abnormal organ development, or erratic heart rate, there has always been something to induce anxiety and rob some of the joy of experiencing the wonder of pregnancy. I just never thought that there would be something like this. Something that you have to live with every day that you know there is no hope of a miracle occurring. No hope of a misdiagnosis. No hope of scientific intervention. No hope for this child. Our child. Our beautiful baby. We wanted to find out the gender together in a special moment with just the three of us because these are some of the few moments we will get to share with her. Before we saw the words in the envelope, some of the confetti fell onto the bed with pink words exclaiming ‘It’s a Girl!’ It was hard. It’s what I wanted, just not like this. Knowing she won’t be coming home with us feels like a sharp knife slowly pushing into me. So intense that I have doubts if it’s really happening, as if my mind is trying to protect me from it.

I know she will be with God soon. I know her life will soon be lived to its fullest potential. That she will stare upon the face of God in amazement and He will exclaim, ‘hallelujah, you are home!’ I know one day when I too leave this world, she will welcome me and tell me amazing stories of what she has done and who she has talked to. I know that one day she will grab my hand and ask me for a dance. I know that I will get to hold her and look into her eyes. I know I will get to tell her I love her. And all will be good. All will be perfect, for I have hope in the One who saves.

Courtesy of Rachel Jacobus

The next few months felt like a blur. I was more exhausted than I had ever been after being diagnosed with anemia while also trying to care for a 6-month-old baby and a 3-year-old toddler. Jared typically works 15 hours a day 7 days a week, but he had sacrificed many work hours to be at home with me and the boys to help get us through our days both emotionally and physically. Each and every day I had to wake up and beg God to give me enough strength and endurance to make it through yet another day. Friends, I will tell you, He delivered! Through this journey of carrying our sweet baby girl I experienced happiness and peace like I’ve never experienced before. People stepped up to help us around the house, church groups came and did our gardening for us, countless gifts and cards poured in, messages, prayers, hugs… never once did I ever feel alone in our journey.

Courtesy of Rachel Jacobus
Courtesy of Rachel Jacobus
Courtesy of Rachel Jacobus
Courtesy of Rachel Jacobus

We wanted her name to be significant to light or bright or SOMETHING that reminded us of the sunrises and sunsets that we experience every day. Every time we watch a gorgeous sunrise or sunset we are reminded of our sweet little girl…we decided to name our precious baby girl Clara Rose.

At 31 weeks I started developing a condition called Polyhydramnios. Because of her condition, Clara wasn’t practicing swallowing amniotic fluid so it continued to build up and place pressure onto my lungs and ribs. At 32 weeks I was measuring 41 weeks pregnant. I couldn’t breathe, I could barely move, I was hardly making it through the day. The specialist felt I could no longer continue through the pregnancy with how fast I was accumulating fluid. The high level of fluids were placing me at risk for a placenta and cord prolapse so she asked us to move up the induction to the following day.

Erika Brooke Photography

We scurried to get all the pieces of our puzzle in place; sitters for the boys, pack our bags, clothing and keepsakes for Clara, prayers, hugs and kisses. The drive to the hospital that evening was somber. Neither Jared or I talked much the whole way, but we took in the smells, the light, the way the sun was setting beautifully against the billowing clouds turning them shades of pinks, yellows, oranges, and blues.

Courtesy of Rachel Jacobus

We got checked in and began our induction. My heart very well could have stopped in that moment… it was time to meet her…

Hours and hours went by as they continued to up the Pitocin. Family members came in and out to pray with us as we waited for me to dilate. I began to transition and hadn’t yet asked for my epidural. I began panicking and shaking as the pain grew more and more intense. The nurse checked me and I was at 9cm. She picked up the phone to call the doctor and I could hear the urgency in her voice… ‘she’s transitioned and we’re getting the epidural in now…’

Henry Photography
Henry Photography

After laboring for 21 hours and pushing for 60 minutes, the nurse got on my belly and started pushing down to try and help Clara out. I pushed through another contraction and I remember seeing her little body be removed from me. When they lifted her out and onto my chest, I just remember her still little body lying there, eyes open, curled up and not moving. I started screaming, ‘She’s not moving, she’s not moving!!!’

Henry Photography
Henry Photography

All I could hear were the cries from everyone in the room. I remember hearing the nurse cry as she helped keep Clara up on my chest. I watched as Jared fell to his knees and start weeping like I’ve never seen him do before. I will never forget the groans and painful moans come from his body as he gazed at Clara’s body on my chest. I held onto Clara as I tried so hard to reach for Jared. I wanted so much to comfort him and hold him. I wanted to be there for him like he had been there for me. I wanted to protect him.

Henry Photography

I held her on my chest for a while taking her all in before I passed her to Jared. I studied her face and skin and arms and legs as much as I could because I knew these memories would eventually fade. Her legs were so long and her little feet were just as long. She would have been so tall just like her daddy. Her hands were perfect and I loved holding her sweet little hand on my finger. I wasn’t prepared for her little face to be purple and her body to look bruised.

Henry Photography

I looked at Jared.

‘Do you want to hold her?,’ I asked.

The nurse helped me give Clara to him and he cradled her in his arms, he swayed back and forth, and cried over top of her and kept saying, ‘I just love her so much. I just love her so much.’ He began weeping again and everyone started crying. Everyone in the room was overtaken by sorrow and I remember Jared kneeling to the floor and the photographer praying out loud for everyone. Jesus was near. He was in that room. I envisioned Him standing right there with his hands on Jared’s shoulders as he barely had strength to stand. I envisioned Jesus saying, ‘My power is made perfect, my grace is sufficient, she is safe in my arms…’

Henry Photography
Henry Photography
Henry Photography

My lungs started to burn as I gasped for air. My body sore from laboring the most intense 22-hour labor I’d ever endured out of my three children. My eyes stung as they filled with tears that I could no longer control. I collapsed over her body that no longer held the warmth and softness a newborn possesses when freshly emerged into the world. Her skin now cold…blue…a shell of who she was just hours before she passed from this world and into the next.

I cried out for more time, but fully understood that our time had passed. No amount of time would be enough. No. Nothing was going to bring her back to us. No longer were we going to feel her kicks, squirms, twirls, or punches. She was finally healed. Whole. Safe. Yes, she now is free of pain. She dances in fields and pastures of beauty that no one on earth could ever dream of. She holds the hand of our Savior as He twirls her around like I imagine her earthly father doing. She is clothed in white, pure.

My body went numb as Jared lifted her gently from my hands. Tears fell from his face as he knew he was holding his only daughter for the very last time. He leaned down with me as I kissed her forehead once more. A final goodbye. He shifted his body and turned to walk out the door. Her rose printed muslin blanket flowed down his arms as it draped preciously from her feet. I watched as he was escorted out of the room by the funeral director and I saw my daughter’s body leave me forever, safe in her daddy’s arms. Her body secured gently to her earthly father’s chest, but her soul forever secured in her Heavenly Father.

Worship music played softly in the background and caught my attention as I watched his back walk through the door….

‘You’re a good, good father,

it’s who you are,

it’s who you are,

and I’m loved by you…’

Yes, my sweet daughter. You have a good, good father.


Courtesy of Rachel Jacobus

The nurses placed our bags in a red wagon and sat me gently in a wheelchair. I clinched my white comfort bear to my chest and kept my gaze towards my feet. The wheels on my chair were wobbly and with every turn or bump it startled me away from my dark thoughts.

She’s gone. She should be cradled in my arms as they wheel me out of this hospital. She should be wrapped up in a warm blanket pressed against my chest. My body continues to remind me that there should be a baby in my arms. My milk. My healing. My pain.

I sat in the lobby with the nurses and waited for Jared to come back with our car. They talked casually about this or that and I remember being asked questions I couldn’t answer. Simple ones. ‘Where do you live?’ ‘Do you have a far drive?’ Blank. I couldn’t think. My mind was overflooding with panic.

I began talking to myself… How does this walk through grief work? I can’t. I just can’t… Okay Rachel, one foot in front of the other. That’s it. One step. There you go. Now another. That’s it. Slower. Take your time. Stop. Just stop. Rest.

First step, we’re in the car.

Second step, we drove away.

Third step, we’re almost home.

Stop. Stop. Stop the car. I can’t do this. I can’t go home. I’m not ready. We pulled over as I panicked, and Jared held me close. He rubbed my hand and said, ‘let’s go to a hotel…’

I wobbled through the lobby of the hotel dressed in my big sweats, adult diaper, and messy hair that I left the hospital in. As we were checking into our room, businessmen and women walked by us in suits, heels, hair and makeup, cologne. I stood there frozen in my grief and everyone around me seemed to be in slow motion. I heard nothing as I watched the fuzzy outlines of people pass us by. The world was moving along whether we wished it stopped or not. People moved on as we stood there, ice cold, in our grief.

We slept hard that night and awoke to a new day. A new sunrise. A new unwanted step we had to take without our baby girl. A new day to rely on Jesus for our strength, and a new day to share our story to try and give someone hope and light that there is rest, comfort, and love found in Christ through the depths of this broken and fallen world.

To God be the Glory, forever and ever, amen.”

Erika Brooke Photography

This story was submitted to Love What Matters by Rachel Jacobus. You can follow her journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more powerful stories like this:

‘I need to talk to you guys.’ I just said, ‘the brain.’ My husband was in shock, but I knew. We wouldn’t get our baby girl.’: Mother loses twin daughter to anencephaly after birth, ‘My oldest gave me a lovey for her to take to heaven’

‘I’m sorry buddy,’ I heard him whisper. He laid him down. Just like that, Ren was gone.’: Couple’s emotional final moments with newborn son, ‘We feel your peace, you’ll always be our baby boy’

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