“December 19th, 2019 will forever be seared into my memory. I was scheduled for my routine anatomy scan and excited to see our little girl again. Her heart looked awesome, she was moving around, and all her little organs were looking great. I asked our NP how big she was. She didn’t say anything. I thought maybe she didn’t hear me. I asked her again and she flatly told me her size.
I sat up ready to walk out of the appointment and text everyone how perfect Millie was until she turned around and said, ‘I’m sorry, but your baby has some abnormalities.’ Wait… What??? ‘Your child has Spina Bifida.’
The ultrasound room felt like it was closing in on me. I could not catch my breath. I felt like I was about to pass out. ‘What do you mean? What does this mean? How?’ I took prenatal vitamins and have for over 5 years. I am healthy. I have never had a complication in my life! What do you mean she has a birth defect? ‘Will she walk? Will she have issues with her brain?’ The doctor held my hand and said, ‘I don’t know.’
After we left the appointment, my husband and I sat in the parking lot, held hands, and cried. We promised no matter what happens, we’d stick together and cling to the people we love the most to help. We were going to do this together. We drove straight to our church where our pastors prayed for us. They laid hands on my stomach and cried out to God for healing.
Once I got home, I cried. I cried more tears than I have ever cried in my life. The kind of tears you cry out so loudly and have zero control of the volume. I experienced that crippling pain and hurt I’ve only heard about and hoped I would never have to experience. I had so much to pray about that day, but I couldn’t find a single word to say to God. Things kept racing through my head: ‘Why me? What did I do? Am I being punished for something?’ I could barely get out of bed but forced myself to once my other two kids got home from daycare. I wanted to hug them all day long. Once they were in front of me, all I could do was hide in my closet and cry. That night, I tossed and turned. I was so exhausted, but sleep wouldn’t come to me. I prayed for peace and woke up so refreshed. I was happy and then it hit me like a ton of bricks. My new reality. I have a baby with special needs growing inside of me.
That morning, I was going in to see the maternal-fetal doctor, so I prayed. I asked God, ‘Please don’t let this be real. Heal our baby. If this is what is meant to be though, please have a purpose for it. Use Millie to bring people to you, God. Create miracles through our baby.’ I cried the entire way to my appointment. We made it to the specialist, and she confirmed our fears. We were given three options that day: Terminate, prenatal repair, after birth repair of the lesion on her back. I asked her, ‘What will help my baby walk?’
She referred us to the Fetal Center in Houston to see if we were candidates for in utero fetal surgery. This surgery repairs the spine where the spinal cord is protruding. It was 3 days of intense evaluations to see if Millie and I qualified. I learned so much about my baby and Spina bifida that week. There are four types of this birth defect and Millie has Myelomeningocele. It is the most severe and most common of the four. She also has Hydrocephalus. This is another common thing about people with Spina Bifida. After the longest 3 days of my life, we were candidates. Two weeks after evaluations we headed back down to Houston from Oklahoma to have fetal surgery.
This experience was a whirlwind. It had been one month since diagnosis. The surgery must be done after 24 weeks but before 26 weeks of pregnancy. I was 25 weeks and 2 days. My little one was just over a pound. I have never been so scared of something in my life, but at peace as well. I knew what I was doing was the best thing for our sweet baby. On January 28th, 2020, the doctors wheeled me to the operating room. ‘Am I going to wake up from this? Will my baby survive it?’ By the time I started having a full-blown panic attack, I was out. Our surgery went flawlessly, and we were case number 95 to have fetal surgery for spina bifida at the fetal center we were referred to. They successfully flipped my uterus out of my body, made an incision, popped my baby’s bottom out, repaired her back, and put everything back where it belonged in under 4 hours. I met some very smart and kind doctors while I was there. They held my hand and comforted me when I didn’t know if my baby or I were going to make it through the surgery.
I had to stay in Houston for 3 weeks to be monitored by the fetal center team before being released to go home. After 3 long weeks away from my family, I was sent back to Oklahoma to continue my pregnancy. I had to be on strict bed rest in hopes to stay pregnant until 37 weeks. Millie Grace came into this world in the middle of a pandemic at week 37 kicking her legs and screaming. That’s right, kicking! I was so relieved she was finally here. All the worry and wondering what she would look like and she was beautiful. Born on April 20th, 2020, and weighing 7 pounds 11 ounces. The doctor lifted her up for me to see and instant tears rolled down my face. I kept saying over and over how perfect she was. My girl and I had been through so much together. It was one of the best moments of my life.
They immediately took her to NICU for monitoring. She was taken to the Children’s Hospital the next day to be around the specialist she needed. I wasn’t released yet, so I sat there in my room without a baby or family. Covid-19 restricted visitors and my husband had to leave by a certain time to be with our other two children. Having a baby in a pandemic is hard and sad. No excited family members coming to see you or cheesy ‘it’s a girl’ balloon tied to flowers. Not being allowed to have my mom there with me when I need her the most. I was released on the third day after having her and immediately went to Children’s to be with her. She spent one week in NICU. I only left her to sleep, but I was there first thing in the morning. We were so excited when they told us she could go home. Finally! We were going to be a family of five.
Millie was monitored for exactly one month when they decided to place a VP shunt to help manage her hydrocephalus (water on the brain). We are still very new to this life, but she is your typical baby with a few special needs my other two babies didn’t have. We’ve had two specialists tell us they are confident Millie will walk one day. I still have days of fear for the unknown, but these babies are resilient. Spina Bifida is one of the most common birth defects, but people still think these children won’t have a good quality of life. It’s a scary diagnosis because it’s a snowflake birth defect. No two are the same. There is also no cure for it. Luckily, modern medicine is improving, and we have things like fetal surgery and more doctors researching Spina Bifida. Diagnosis day was the hardest day of my life thus far.
Grief is a very real and exhausting thing. I’ve experienced grief from the loss of a loved one, but the grief I have experienced about my own child is something entirely different. Now Millie is here, I wish I could go back and hug the mama laying in bed crying. I would show her pictures of our sweet girl smiling when I sing to her and her brother, sister, and daddy over the moon in love. I would show her the videos of our baby kicking her legs too. I would also let her know how awesome our family and friends are, how everyone rallied behind us and took care of us.
To any family getting a scary diagnosis, it will be okay! God loves you and your precious miracle. He will carry you through this. They have groups of mothers and fathers waiting with open arms to help you and share their experiences. The women I’ve met through this have helped me more than they’ll ever know. Millie has changed our lives. I am a better mother and person because of her. Thank you, Jesus, for Millie Grace. God is so good.”
This story was submitted to Love What Matters by Megan Kershaw from Oklahoma City, OK. You can follow their 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.
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