In March of 2013, my husband Chris and I were elated to discover that we were expecting again after our first pregnancy (twins) ended in a miscarriage several months prior. We were excited to make it past the mark of the miscarriage of the twins and were even more excited to become parents! I was enjoying my baby and life as best I could with morning sickness! On the day of the mid pregnancy anatomy scan, we were beside ourselves with anticipation, we couldn’t wait to find out if I was carrying a girl or a boy! Chris held my hand as we both eagerly watched the screen! Our baby had grown a lot since 8 weeks! “You’re having a girl.” The technician stated as she performed the sonogram. We were so happy! “I’m gonna have to wear a pink tie!” My husband exclaimed! We laughed and were excited to find out more about our little one. As the technician continued, her facial expressions eluded that something was wrong. She stated that several abnormalities were present and we would need to see specialists the next day. On the way home, we were heartbroken, scared, worried…what did this mean for us? For our little girl? We sat on the couch and just held each other. Family and friends were anxiously awaiting a video announcement to discover the gender. We no longer wanted to do it. We had more important news to share, but we didn’t know what. Unsure of what to do or say, we decided to go on with the reveal and to tell everyone the news once we knew more. Chris put on his pink tie. We put on smiles. We told our world that we were having a little girl and then we cried.
The next morning we walked into the specialists office, it was intimidating, professional, and no place I wanted to be. I didn’t realize that day how often I would have to frequent that place. The technology was more professional and my heart skipped a beat when I looked up on the screen and saw our little girl whom we had named Evalee Grace Hewett. There she was! The ultrasound lasted a very long time, several doctors were present and everyone looked so serious and concerned…these weren’t the dispositions people were supposed to have around babies being born, it was supposed to be joyful and happy! As I lay in the cold dark room we heard the doctors tell us what all was wrong. We were told that Evalee had a rare condition called Hypoplastic Left Heart Syndrome meaning the left side of her heart was severely underdeveloped. They also believed she had Dandy Walker syndrome which is a malformation of the brain, she had abnormal kidney size with poor function, as well as a few other minor abnormalities. They said that Evalee would be fine in the womb, but once she was born her chance of survival was slim. They told us she would probably live for up to 2 weeks. I don’t think we said a word, it just didn’t seem like this was a real life event that people actually had to go through. We listened to it all and tried to process it. The specialists made us appointments in Atlanta with doctors who perform a series of surgeries for HPLH syndrome post delivery. We were there for hours. We discovered that the surgeries were very risky and with all that Evalee had going on they gave her less than a 10% chance of survival. We walked away hopeless. “Termination” was offered on one of our many visits to the specialists, but we declined. This was my baby, this was her life and I was not going to take it from her. I knew that however short it was, God had a purpose for her life. Through much prayer, we knew Evalee was not going to make it. The next 15 weeks were agonizing. I wanted to run away from it all, but I couldn’t. I knew I had to deal with it. It was my lot. Like all expecting mothers I couldn’t wait for the day I would meet my baby but I knew once I did, she was going to die. So I tried to embrace every moment with Evalee that I could. I read the Bible to her, I sang to her, I prayed over her, and I loved her. God was my strength, He kept me going when I thought I couldn’t take another step of my journey.
On November 13, 2013 Evalee Grace decided to make her appearance! I was so proud of myself for delivering a baby and I was relieved that that part was over! I was so excited as I held my baby close, I couldn’t believe I had a real baby! The joy of the moment quickly dissipated when a voice said “She’s not doing good.” They took her away. Everything the doctors hypothesized was true. She was in bad shape, worse than they thought. They discovered another serious problem that wasn’t detected on the ultrasound. That too, would’ve required surgery that day. Everyone knew our desire was to spend time with Evalee, so we were led to a private room in the NICU where we held her in our arms and spent her whole life with her. Her hair was super curly and bright red, her skin was so soft and she had the sweetest little mouth. She lived for 8 hours. It was hard watching her take her final breaths and to experience the pain that followed such a tragic event. There was grief but it was coupled with grace. I carried Evalee grace but Gods grace carried me.
Seven months later we miscarried another baby. We were beginning to think we would never have a baby of our own. People gave their advice, but neither of us were ready to give up hope. I soon discovered that I was expecting again and as soon as I noticed, I knew God was going to see that we brought this baby home! I praised the LORD for it that very day! At our first doctors appointment I was anxious, but God would comfort me and remind me of the victory He had already given! I relaxed and we soon got to hear the heartbeat! Everything was going well. We reached the 20 week mark and headed to the dreaded anatomy scan. The technician placed the probe on my belly and to the shock of all present, there were two babies on the screen! One had evidently been hiding! We were sooo excited! The look on her face was all too familiar. “It’s two girls, but something is wrong with one of them, baby A” she said. I thought I’d been given victory, what was this all about. Why why why did this keep happening to us? We were sent to the specialists that afternoon where more tests were done. It was determined that Baby A, whom we named Elsie Hope, had Turner syndrome which is a chromosomal disorder in which a female has one X chromosome instead of two. 99% of babies with TS die in the womb. Baby B, Emeline Faith Hewett, appeared in good health, but with Elsie’s condition, all of us were at risk. They gave us several scenarios that would likely occur. They suggested “termination of Baby A” and that option was swiftly declined. One of the other scenarios was that I could go into labor prematurely after the demise of Elsie. Which is eventually what happened. Elsie lived longer than anticipated but passed away, unbeknownst to me, at about 24 weeks gestation. I went into labor at only 25 weeks. The doctors tried to stall my labor for a few days but it was unsuccessful. On the evening of February 18, 2015 I gave birth to Elsie who was stillborn and then to Emeline who was the tiniest little thing (1lb 14oz) crying her little heart out! She was immediately whisked away. We were sad that Elsie had passed but our attention quickly turned toward Emeline who was 14 weeks premature and on her way to the Neonatal Intensive Care Unit. We had to be strong for her.
Emeline stayed there for 87 days. It was a rollercoaster ride! We experienced worry and suspense as she struggled those first few weeks and such joy over having a baby to take care of and love. God’s people fervently prayed on behalf of “Little Miss!” In May of 2015, she got to come home! I’m so glad that we let Elsie live until God said it was her time to go. My body’s response at her demise was labor. Had I agreed to the “termination” plan, I likely would have gone into labor at 20-21 weeks and Emeline probably wouldn’t be here today….but we let God lead. We have the sweetest little girl! Finally Victory!
Genetics testing revealed that there was no reason for our losses. After experiencing the joy of loving a child so very much, we decided we would like another baby to love. Like always, the first 20 weeks were filled with excitement, anticipation, fear and hope. All of these feelings seemed to heightened during the mid-pregnancy anatomy scan. We had an ultrasound technician that we had seen over and over. Surprisingly, things seemed to be going extremely well! The only “odd” thing I noticed was the baby’s head shape was not perfectly round…but not everyone has a perfectly round head! She moved to the heart and relief flooded over me as she typed, in code, the presence of each chamber! We found out that our sweet little babe was a boy! Our first boy (that we knew of!) We already knew his name would be Christian Pate Ezra Hewett II, after his amazing daddy! The scan ended, of course the technician couldn’t tell us anything, so we returned to the waiting room, still a little nervous but feeling good, to wait on my doctor to share the results. They called us back and we waited again, I became more afraid and I told my husband “I don’t think I can do it again if something is wrong.” When the doctor walked in, I could tell by his demeanor that I wasn’t going to like what he had to say. My heart pounded as we shared greetings and small talk. “Just tell me already” must’ve been written all over my face, so he dropped his head and began to tell us what the scan had revealed and then said “We aren’t sure that this condition is compatible with life.” The world stopped. I cried. “I can’t do this again” I thought. The doctor left us alone so we could pull ourselves together before facing the crowded waiting room. It didn’t take me long, I was ready to get out of there so I could cry by myself in private. I took a deep breath and wiped my eyes, I picked up my toddler and opened the door. A familiar nurse looked back at me with the most pitiful eyes, I knew she was hurting for me and that she would be praying for me. I acknowledged her and darted through the busy crowd of people carrying on like everything was just fine-there we’re people signing in, smiling, eating french fries, and chatting about how they wished they were having a girl. On the other side of the door, in the hallway, there was complete quiet and a peace just swept over me. We walked toward the elevator and made our selection, as we waited I looked up at my husband and said “I can feel His grace already.” He’s seen us through before and He can do it again. I thought of Philippians 4:13 I can do all things through Christ which strengtheneth me.
The next morning we, once again, had to go to the specialists. They informed us that Ezra had a birth defect called spina bifida and that our baby had the most severe form called myelomeningocele. Myelomeningocele is a neural tube defect that leaves the spinal canal, membranes, and nerves exposed across several vertebrae. The doctor and genetic counselor went on to explain everything that we could possibly face medically. We learned that there were other conditions associated with myelomeningocele including Chiari II Malformation, which Ezra had. This is when the brain becomes abnormally positioned and causes cerebrospinal fluid to become blocked which leads to hydrocephalus in which case he would likely need a shunt to drain the extra fluid. We were told he would likely have mobility issues and could even be paralyzed and/or experience abnormal bladder/bowel function. We inquired about his mental capacity and we were relieved to know that 80% of persons with spina bifida have normal intelligence.
We walked away that day just like we’d done so many times with such mixed emotions. Relieved that our baby would live, sad that he had problems, anxious about the medical aspects for him and for myself. I dreaded another NICU stay. I remember wondering if we were capable of properly caring for such a medically fragile child with such special needs. All we wanted was for our son to have a good and fulfilling life and to love the LORD with all of his heart, soul, and mind! This could still be so.Jesus saw us through before and I knew He would again.
Ezra was born on the night of July 3rd! There were fireworks going off outside of my hospital room, although I didn’t know it! He was 7lbs 4oz and a lot chunkier than Emeline was! I got to hold him and admire him for a second before he had to go to the NICU. He had surgery less than 48 hours later. He only stayed in the NICU for a week!
In the midst of dark ultrasound rooms with medical professionals telling you about how bad all of your (baby’s) problems are every week, life can seem pretty dark. When termination is suggested as an option, it may be tempting, it seems like the only route to escape from all of the terrible unknown. But that is all it is. Unknown. Just because it is unknown doesn’t mean that it will be bad. Sometimes, more often than not, it is not as bad as it sounds, it’s often good. I’m not throwing my doctors under the bus, they were great, but during my innumerable ultrasounds and tests, no one ever told me how sweeeeet Ezra was going to be (and he is the sweetest!) No one ever told me how cute his fat cheeks and legs would be, how beautiful his blonde hair would be, how blue his little eyes would be, how sweet his breath would smell, how I would love his laugh more than music, how my heart nearly melts every time he says “ma ma ma”, or how all of the problems in the world would dissipate when I picked him up for a cuddle! In the doctors office it was all about what all was “wrong” with him and what he wouldn’t be able to do-but out here in the real world it’s “Look what he IS doing!!!” I know that as my baby grows up there will be harder challenges to overcome but I am excited to be the one to help him overcome.
The doctors have been unable to discover a reason for our problems but we have trusted the will of our Savior, knowing that His ways are not our ways, but His ways are best. Whatever path he has for us to journey down, He will carry us. Please don’t take life! Give life! Trust Him.