By Sara Willbanks
Mommy to Amari
Walker-Warburg Syndrome
March 14-16, 2024
We went in for the typical 20-week ultrasound with our doctor, excited to find out if the baby was a boy or a girl. This was my third pregnancy, and we had always wanted a big family. At the time, we already had a son, Jason (age 7), and a daughter, Lily (age 3).
The very next day, I received a phone call from my doctor himself. I was confused as to why he was calling me personally. That’s when he told me something was wrong with our baby’s brain and that we needed further testing. We were terrified. We began seeing specialists and traveled to CMH in Kansas City for more answers. With every ultrasound, we received more and more devastating news about our baby girl. It was incredibly stressful and frightening.
We hadn’t expected anything like this to happen. We had two healthy children, for which we were so thankful, so hearing that something was wrong came as a complete shock. At the beginning, all we had hoped for was a happy, healthy baby. We told ourselves we would stay strong and handle whatever came our way. After probably more than 50 ultrasounds and countless conversations with doctors about the severity of her abnormalities, our only wish became that she wouldn’t feel any pain and that she would only ever know love from her family.
During my pregnancy, we never received a clear diagnosis. All we were told was that things were “bad” and that we should expect the worst. Doctors said I could lose her at any time. Every part of her brain was underdeveloped or malformed—she had severe hydrocephalus, lissencephaly, alobar holoprosencephaly, an underdeveloped cerebellum, and a “Z-shaped” brain stem. Through it all, I truly believe God gave us the strength and comfort we needed. We were surrounded by supportive family and friends.
A dear friend encouraged me to reach out to On Angels’ Wings. At first, I was hesitant. I was overwhelmed with stress and constant bad news, and I wasn’t sure I could handle one more thing. But now, I cherish those photos and memories more than I can put into words. They brought light and happiness during the darkest storm.
We received both maternity and newborn photos through OAW. I was so glad I reached out. Both photographers were incredibly kind and accommodating, giving us exactly what we wanted. The maternity session felt especially meaningful because I had never had maternity photos with my other two children. It was comforting to feel a sense of normalcy for a moment, and the photographer worked beautifully with our kids. It truly was a special experience.
As the pregnancy progressed, things continued to decline with each scan and appointment. It was incredibly hard to process because I could feel my baby kick, and aside from her brain, everything else looked fine. Accepting that we would not have a positive outcome was heartbreaking.
I went into the hospital at 5:00 a.m. on a Wednesday, and the induction process began. We had all agreed that I would only have a contraction monitor—nothing else. I chose to have an epidural because I was being induced, and the Pitocin made contractions especially painful. I labored all day and all night without much progress, so the doctor eventually decided to break my water. After that, things moved quickly. Less than two hours later, at 8:46 a.m. on March 14, 2024, Amari was born.
Given the severity of her differences, my husband and I had agreed to minimal medical intervention. It was an incredibly difficult decision, but I’m grateful we made it, because we were able to hold her right away. She was beautiful. Our other two children were present shortly after she was born, and we wouldn’t have wanted it any other way. My son—now almost 8—looks back at those photos, remembers Amari, and shares those memories with his sibling. Those moments have helped him cope with his grief as well.
Amari lived for two days after she was born. Considering we had been told she might not survive birth, we were surprised and deeply grateful for that time. She was surrounded by love, and that’s all we could have ever asked for. With the help of OAW, we were able to have photos taken immediately after her birth. I hold those moments of normalcy very close to my heart.
During our stay at CMH, the doctors, nurses, and counselors went above and beyond for our family. We are forever thankful to them. They gave us keepsakes, supported us emotionally, and helped guide our other children through an experience no child should ever have to face.
After everything happened, samples from Amari’s umbilical cord were sent for testing. It took just over six months to receive the results. That’s when we finally received a diagnosis: Walker-Warburg Syndrome, an extremely rare and severe form of muscular dystrophy that affects the brain and eyes. Only about 1 in 100,000 babies are born alive with it. During pregnancy, I was often frustrated that doctors couldn’t give me a diagnosis I could research and understand. Over time, I’ve realized that having that answer wouldn’t have changed anything. I learned to trust God and believe that He has a plan for our family.
Now, nearly two years later, we still struggle every day with missing our precious baby girl. We often sit with our children and look back at photos from that season of our lives. We stay busy with homeschooling, sports, and spending time with family and friends. We were truly blessed to have the opportunity to love a special baby like Amari. She taught us so much.
Amari passed away on my birthday. I’ve always said she was the best gift I could have ever received because she showed us what love truly means. She taught us to cherish our children, to have more patience, and to be present. She lives on through how we love our family and others every single day.
We talk about Amari often and openly. She remains a part of our lives and our story. We believe God has called us to raise His children, and we pray daily that we will raise kind, loving, and compassionate people who will do good in this world.
The photos we have of Amari have helped our family tremendously through the grieving process. We look back on them with our children and share her light with others. On Angels’ Wings was a true light during our darkest storm. On the one-year anniversary of Amari’s passing, we received a memorial gift, and it was comforting to know we weren’t alone.
I have recommended On Angels’ Wings to several people because of how much they helped me. I always tell them about the maternity and newborn photos, because those memories mean everything to me. They are something I will cherish and look back on forever.
