Martha : Time Cut Short

May is Anencephaly Awareness Month

By Taleah Johnston
Mommy to Martha 
Born still on May 24, 2022
Anencephaly

My husband and I take a fishing trip for our anniversary each year. When our anniversary came in 2021, we were ready for a few days at the lake and decided it would be a good time to decide if our family was ready to grow again. After just a bit of discussion we knew it was time to add another to our four back at home. Six short months later we had a positive test and morning sickness to confirm. Excited as usual, I called to start the doctor visits.

The day of our first appointment came and while excited, there was an unsettling feeling that I couldn’t shake. The ultrasound showed us the first glimpse of our bundle of joy, and nothing to cause concern. At the second ultrasound, it took a while to find the baby’s heartbeat. Once they did, I breathed a sigh of relief but still couldn’t shake that unsettling feeling. I told my husband afterwards that I thought we were going to end up with a cesarean this time. Having my others naturally, there was no reason for that conclusion, especially at this early in the pregnancy, but I just knew.

Appointments ticked by and finally we were to the big 20-week ultrasound. It’s always a big one for us because we can’t wait to find out the gender and start calling our baby by the name we’ve chosen. Of course, they do all their measurements and check to make sure baby is fully formed but, with four healthy children at home, why would we worry about anything else? As we made our way to the doctor’s office, I told my husband I didn’t want to go. He was excited to see if we were adding another girl or if our only boy would get a brother. I couldn’t share in the excitement but had no idea why.

During the ultrasound we learned we were expecting a sweet baby girl, Martha Ellen. We shared her name with the ultrasound tech and discussed who we thought she’d look like and what we thought her personality would be like. We talked about how excited her big sisters and brother would be and what they were like.

We had an immediate follow-up with the doctor after the ultrasound, and I still had that unsettled feeling I couldn’t shake. The doctor didn’t mince words and immediately told us the news: The top of our baby’s head was not there. She had anencephaly, and she would be unable to survive on her own outside the womb.

My. World. Stopped.

 

My sweet baby, the one I’ve just started to feel moving and summersaulting in my belly, won’t live?

How could that be?

Why could that be?

He told us our options included termination and carrying her to term but that her life, if born alive, would be very short. Without hesitation we knew we would carry her until God decided it was her time. He had already made her, knit her together in her mother’s womb, and she had survived this long for a reason. It didn’t make sense to us, but we knew, and still know, her life has meaning. The door shut behind the doctor and the tears I’d been trying to desperately hold back fell like a flood down my face while a sound I’d never heard myself make before escaped my being. I was going to have to bury my baby.

We finally made it home to our four babies. Walking into our home after the doctor, our children could tell something was wrong. Something was very wrong. My husband had them sit down and explained to them their little sister, Martha Ellen, wasn’t going to make it. Questions started coming and we tried our hardest to answer them. We also decided to share the information with our immediate family; we needed the prayers and support to get through as we prayed for a miracle.

I cried daily. We have a dairy business, and the kids and I were responsible for taking care of the calves…almost 400 of them. I vividly remember at that next feeding for our calves I sat in the middle of all the new life around me and allowed myself to sob and desperately cry out to God with words I couldn’t form. After a bit I picked myself up and carried on with the chores that needed done. The farm work and taking care of my four at home were a blessing that kept me going throughout those days. I prayed every day for the morning light and each night cried myself to sleep as I realized another day had passed and it was one less day I had with my sweet Martha. God let every day during that week be a sunny day, another blessing I needed to keep going.

Around the same time, we knew we needed to start making our other plans…for her burial. I waited until our ultrasound at 32 weeks and finally consented to going to the funeral home and getting our plots at the cemetery. Walking into the funeral home, being shown the casket my daughter would be buried in while an employee at the funeral home had a growing bump as well, was torture. Martha kicked and squirmed the entire time we filled out paperwork, explained the things we wanted, and decided the songs we wanted to play at her little graveside service.

The day of maternity pictures arrived – they would be on our farm. My head spun as I tried to make sure everything was ready for them. Chores done, kids fed and clean, husband home on time. My sister-in-law came up to do our hair and my makeup. Our OAW volunteer photographer, Amanda, arrived with a couple outfit choices for me and outfits for my kids. I was so grateful for her ability to put it all together for me. In normal circumstances I have trouble finding just the right outfits for photographs; with these circumstances, I knew it was beyond my ability. I apologized for the tears I knew I’d shed and, sure enough, as we stood in the field at sunset, tears started creeping down my face, captured perfectly in photos that really do speak a thousand words. The tears mixed with sounds of laughter as we enjoyed the time with our kids and the dogs in a place we loved. Tears and laughter. Joy and pain. Perfectly intertwined.

The last few weeks of pregnancy were a blur. I tried to put together a hospital bag and pick out the things I thought we’d need. It was unlike any bag I had ever packed before. I tried to prepare myself for what lie ahead, knowing there was no way I could. Our friend brought me a dress she made for Martha to wear. It was perfect, pink with white lace and a beautiful flower. So much more than anything I could have imagined or asked for. In a brave move one night tried to shop for little socks for her tiny feet in the infant section at Wal-Mart. It ended in a sea of tears and no socks. Nothing they had was just right for Martha.

The depression during that time was overwhelming. I was exhausted as the days ticked by…33 weeks…34 weeks…35 weeks… I realized how little time we had left. We kept praying for a miracle but conceded that “even if You don’t, our hope is You alone,” as the song by MercyMe says. We scheduled an induction for 39 weeks and hoped and prayed we would have that long with her.

Then 36 weeks. One final ultrasound. We went in hoping for a miracle. We saw our sweet baby again, heard her beautiful heartbeat. Everything else about her was the way it was supposed to be except for her little head. But my blood pressure was too high. They admitted me for observation and while sitting in the observation room I knew that it would be the day I had been dreading, the one I couldn’t see myself getting through or getting past.

Not long after being hooked up to the monitors the doctor came in and explained we had to have a baby. That day. My blood pressure was high, but her heartrate kept dropping. If there was any chance at holding our baby while she was alive, we had to have an emergency c-section because they didn’t think she would live through an induction. I looked at my husband and we agreed. We wanted the time we could have with her, and I wanted to give my husband and our kids the chance to hold their baby sister while she lived, if possible. As soon as we said yes, preparations began. We messaged our church and family and called On Angels Wings. More blessings from God kept coming as Amanda who had taken our maternity pictures would be able to come take our hospital pictures too.

We walked back to the operating room, hand in hand. I was terrified. A few short minutes later, as songs about my Jesus played on the radio in the room, they pulled out my Martha and held her up for us to see. She was beautiful. The sound of a baby crying at birth that I’d always held my breath until I heard, never came. The nurses let my husband cut her cord then wrapped her up and checked her heartrate. It was still beating – faintly, but there nonetheless. She weighed 4 pounds 2 ounces. They handed her to my husband who got to hold his new baby girl for the first time. He leaned her in towards me as I stroked her soft face. I was speechless. She was here. And we were spending our very last bit of time with her.

They finished putting my body back together and wheeled us to the room. As soon as we were in the nurses checked her again and still her heart was beating. We brought our other children in and they all took turns holding, talking to, and loving on baby sister. All the while Amanda was snapping photos of each fleeting minute. The nurses checked Martha’s heartbeat again. It was gone this time. She had gone to heaven and was in the arms of Jesus instead of here in ours. So silent, so still. One hour and 22 minutes of time with Daddy, sisters, brother and Mommy.

The tears never ended that night and after our visitors left it was my husband and I with our sweet, sweet Martha. I held her all night. Skin to skin, wrapped in our love, transferring any bit of warmth from our bodies to hers that we could. Finally, the next day came, and it was time to let her body go. Handing her to the funeral director my entire being cried out the pain I was feeling.

On our drive home from the hospital, Heaven Help Me by Zach Williams, one of the songs we’d chosen for Martha’s graveside service, began playing. God was with us. We stopped by the memorial place to finalize her headstone with the birth and death date. Then home to a house not filled with the sounds of infant cries we’d always known before.

The week following was a blur as we shared time with family, our church, and friends. The nights were never ending, sleep wouldn’t come to soften the pain we felt. Just over a week after she was born and left this world, we laid her little body to rest. The tears always continued, never seeming to let up.

My body has been healing, as has my heart. The tears still come most every day. Not always for as long, but when you see tears silently slip from the corners of my eyes, it’s the extra love I have for my sweet baby in heaven being shared. I realize my heart has been broken and will never be the way it was before. I got a tattoo over my heart in her honor, as a way of showing Martha to others and that she’s always with me. Trying to go on without my baby here has been horrible, but God has led me through the journey so far and He’s still with me.

I am thankful to know that Martha’s life has purpose and meaning just as mine does. I’m thankful for On Angels Wings being there to capture pictures of the memories of that day; I stare at them often and love walking by her pictures all over our home. I’m thankful for the health of my other four kids and that I have been given the opportunity to love them for longer here. I am thankful to not have to go through this alone, my Jesus and my husband are always there. And I know when my time comes, and I top that hill at the end of my journey, I will look down and see my Jesus. He will welcome me with loving arms and wrap them around me. Then He’ll reach to His side and pick up my daughter and hand her to me again. My Jesus will give me the desires of my heart. My baby is safe with him and one day I will see her and hold her again. For all eternity.

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