Written by Samantha Sommerville, Mother to Lillian, born with Spina Bifida

At the beginning of COVID, I had my beautiful baby girl, Lillian.

At my 20 week ultrasound, we were told that she had spina bifida myelomeningocele. We were told that she would be paralyzed from the waist down, and they didn’t know about her mental state due to hydrocephalus. From then on we traveled four hours roundtrip for prenatal care, her delivery, and now, her continued medical care.

To be honest, it was a very long and emotional pregnancy. I was offered an abortion at every visit up until 24 weeks. At 23 weeks, I had special testing done to determine if anything else might be wrong with Lillian and to determine if I would have the intrauterine surgery. We got the test results back 3 days before the qualification deadline and ultimately we didn’t move forward with intrauterine surgery.

On March 24th, I delivered by c-section at 39 weeks. Lillian Grace was a healthy, Beautiful, full-term baby, weighing 7 lbs 6 oz.

3 hours after she was born she had her first spinal repair surgery. That surgery lasted seven and a half hours. Before they took her away to get prepped for surgery I had only been able to see a glimpse of her. 14 hours after delivery, I met my daughter. It was the longest 14 hours of my life.

She stayed in the NICU for 18 days, and on her 9th day had a VP shunt put in for her hydrocephalus. Thanks to COVID, our NICU experience was probably a little different from the standard Spina Bifida NICU experience. 

After I was discharged, we were put on the one visitor only restriction. We could drive 2 hours to the hospital every day. I would pump in the car on the way down, pump next to Lillian, and then pump again in the car on the way home. I would get to visit her for about an hour and a half to two hours, and then my husband and I would switch and he’d get the same amount of time. Due to Lillian’s repair on her back, we weren’t able to hold her for the first two weeks. As she had to stay on her belly to heal.

We also have a 4-year-old so as much as we all wanted to be in the hospital all the time, we prioritized time with our 4-year-old son as well. We couldn’t do many overnight stays those 18 days. 

Lillian is six months old now, and despite having another hospital stay due to an infection and three more surgeries, she is the happiest baby ever. 

She is always smiling and only cries when she is hungry. She is doing great! She is worth everything that I went through during my pregnancy. She is loved by her mommy, daddy, her older brother, and the rest of our family. She is the light of our lives, and I learn so much from her every day. She has taught me to be grateful for the simple things.

We definitely have a long road ahead of us, right now we are working on her feet since she has clubbed feet, but she does have leg movement. We don’t know yet if she will be able to walk, but to me, it doesn’t matter, she’s perfect!