‘Kissed by Angels’

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By Effaney Crain

My daughter (Zoie) and her husband (Will) were pregnant with their fourth and final child. They had three boys and this one was a girl, to be named Willow. 

At the 20-week anatomy scan, it was found that this baby girl had spina bifida myelomeningocele affecting level L4-S5. Myelomeningocele is a severe type of spina bifida in which the membranes and the spinal nerves protrude, forming a sac on the baby's back. Individuals born with spina bifida (myelomeningocele) face serious physical consequences, including paralysis, insensate skin, loss of bowel and bladder control and cognitive deficits. Also experienced is a secondary effect called Chiari 2. Chiari malformation type 2 (CM type II) is a type of Chiari malformation in which both the cerebellum and brain stem tissue extend into the foramen magnum (the hole at the skull base for passing of the spinal cord). This can cause issues with swallowing, vocalization, upper extremity weakness, motor planning issues, eye issues, and require eventual decompression surgery as she grows. Water on the brain and enlarged ventricles are very common and often required a shunt placement after birth. 

I immediately placed Zoie and Willow on as many prayer chains as I could. Zoie also came to church with me to be prayed for by close friends.

We were referred to St. Louis Children’s hospital, where we met with neurology and fetal surgery to discuss options. Termination was mentioned and quickly dismissed. She could carry to term and deal with immediate surgical repair and all the above-mentioned issues, or we would entertain prenatal surgery. We decided on fetal surgery. We were limited timewise as surgery had to be completed by week 27. The closest option for this was at the Chicago Institute for Fetal Health at Lurie’s Children’s hospital. Appointments were made and we met with a large team of specialists. Risks included premature birth, fetal death and maternal complications including possible death. 

After many prayers and discussions, we made the decision to move forward with fetal surgery. This was to be an eight-hour surgery involving putting mom and baby under general anesthesia, taking Willow out of her protected environment of the uterus, putting the spine back into the body, repairing several layers of protection that covers the spine and putting her back in. She would stay in the hospital for two weeks, then at our aunt’s house who lived close by for two more weeks before returning home to give birth in St. Louis. We were warned that many don’t make it home and premature birth is common around two weeks after this surgery. 

At 26 weeks and five days gestation, surgery was completed. Surgery lasted the entire eight hours. Many prayers went up this day during surgery. Both Zoie and Willow came through well. After a couple of days in the hospital, Zoie began having contractions that medications did not stop. She felt a large gush of fluid and told the nurse her water had broken. I was at home four hours away on my knees along with my mighty prayer warriors. It was too soon for Willow to come. 20 minutes later, the fluid was tested and determined NOT to be amniotic fluid. 

Funny fact, they weren’t sure what had happened! Will called me later and told me he knew God’s hands were on her, because after you have had three kids, you know what it feels like when your water breaks. Contractions stopped and Zoie and Willow stabilized, and 10 days after fetal surgery, Zoie was stable enough to move to her aunt’s home on strict bed rest. Then, four days later, early in the morning, Zoie got out of bed and her water broke. She was driven to the hospital where they confirmed she was in labor. Again, I hit my knees and called my prayer warriors. Medication was able to stop contractions and Zoie was to remain in the hospital until she gave birth. We would not be making it home to deliver in St. Louis. Zoie was given steroid shots so Willow’s lungs could develop.

On July 24 at mid-afternoon, I received a phone call that Zoie was again in labor, and they were going to allow her to deliver. Willow was 29 weeks gestational age. I had a sense of urgency stirring within, so after calling and texting my prayer warriors, I asked God to clear the roads so I could get to Chicago in time for my daughter. I arrived in record time, and 30 minutes later Willow was born, weighing 3-pounds-1-ounce. Willow was rushed to NICU, and I headed home, as COVID precautions were still in place, this would be the last time I saw them until they were discharged. 

Willow went through a great amount of testing. The physicians expected her to not have much leg movement, to not be able to void her bowel and bladder and the question of whether she needed a shunt was still to be answered as her last ultrasound showed water on her brain. I already knew God had this entire situation in His hands and the outcome would be nothing less than a miracle. An MRI revealed minor enlargement of her ventricles with minimal fluid around her brain. No shunt was needed. She had a small hole in her heart which was common for premature infants. She needed oxygen and had difficulty eating from a bottle, so a tube was placed up her nose into her stomach for her nutritional needs. One of her kidneys was half the size of the other, and they were both small. She contracted e coli from the wound in her back which wasn’t fully healed and was placed on high dose antibiotics. Doctors weren’t sure Willow would overcome this infection. She recovered completely. Nephrology continued to run tests, unsure how Willow was voiding her bladder completely. She failed her initial hearing test and another near discharge. Physicians said to expect moderate to severe hearing loss. We will see about that. 

After three months in the hospital, she was eating a small amount from a bottle and discharged home. St. Louis was contacted for follow up. She was set up with Early Intervention services and receives physical, occupational and hearing therapy. Her first set of appointments in St. Louis revealed she had total hearing in both ears, and hearing therapy discharged her. Willow soon was taking full nutrition from a bottle. She began kicking her legs, turning to sounds and reaching for toys placed in front of her. 

Nephrology completed more tests in St. Louis, where she continued to demonstrate she was voiding her entire bladder independently. Physical therapy in St. Louis was astonished by the leg movement that she had. She also has sensation in every part of her lower extremities except the bottoms of her feet. Every time I would hear a doctor say, “this is unbelievable” or “I don’t know how she is progressing like this” my reply would always be: “I do, it’s a God-thing, and He has had his hand on this child from the moment she was conceived.”

As of today, Willow is 11 months old. She is just about sitting up on her own, starting to roll from her back to her left side, picking up toys and mouthing them, eating baby foods, laughing, babbling, dancing to music, and bearing weight through her legs. She laughs with the joy of the Lord in her heart. Her last in-depth MRI may have shown her Chiari 2 present, however, the doctor who discussed the results with us said she saw nothing in the MRI that was of concern to her. Her kidney scan revealed both kidneys have grown and are .1cm of being the same size. She is getting stronger every day. I see the miracle shine from within her and everyone who comes across her path mentions there is something special about Willow. I know. She has been kissed by angels; the hand of God placed on her body to not just survive but thrive. God has shown Himself in ways through this journey that are not explainable without the mention of His name. Big things are in store for her, as she shares her story and the work she will do for God.