My husband, John Mark, and I found out we were expecting our second child in February 2007. Our son, Jack, was 8 months old, and we were so thrilled that he would have a sibling to grow up with. My pregnancy with him went so smoothly, that the news we heard at our 20 week ultrasound was a tremendous blow. Our baby had an omphalocele, which meant that early in development her abdominal wall didn’t fuse completely, and part of her gastrointestinal tract protruded outside of her belly. She also was found to have bilateral club feet and a malformed sacrum (lower spine). It was difficult to hear, but at the same time, her heart and brain looked healthy, so we had no reason to believe that she wouldn’t make it through this. During the following few months, we discovered that her condition was more complicated than we initially thought. They could never locate a bladder, which led the perinatologists to believe that she had a condition called cloacal exstrophy. This is when the organs in the omphalocele prohibit the bladder and genitals to fuse together during development. Thus, her bladder and uterus were split into two and were also located outside the abdomen. Cloacal exstrophy is a rare disease that is incredibly complicated, but with proper care, the children can grow up to live relatively normal lives. Many children have permanent stomas and catheters. Some cannot walk. But I have talked to several mothers with exstrophy children, and these kids have been nothing but blessings for their families.
Cloacal exstrophy often affects lower extremity and spinal development. The numerous ultrasounds indicated that our daughter had a very small right leg, bilateral club feet as mentioned before, and severe scoliosis of the lower spine. Her pelvic bones were spread apart, which is very common in CE (this is usually corrected within the first few years of life by realigning the pelvic bones and placing the child in traction to allow them the bones to properly fuse and heal).
Most babies with cloacal exstrophy are unfortunately aborted, and many pediatric urologists have never performed (or have rarely performed) the complicated surgeries required for the reconstruction of the child’s urinary tract and genitals. We researched online, interviewed surgeons, and prayed fervently about where God was calling us to seek treatment. We decided to move to Baltimore, Maryland to deliver Bernadette and have her treated at Johns Hopkins Hospital We met with the top urologist for this condition, Dr. John Gearhart. We spoke with a pediatric orthopedic who would work on her legs, feet, and pelvis. We also spoke to the perinatologist, neonatologist, and pediatric neurosurgeon. It was incredibly difficult to say goodbye to our home with the expectation of not returning for several months. And we knew that we would spend many more weeks in Baltimore during future trips for subsequent surgeries. But as parents, we never thought twice about what we were doing. God opened up many doors for us, our friends and family supported us, and we just went with it. We were scared out of our minds, but it just simply came down to wanting what was best for our daughter.
We packed our bags on October 5, 2007 and drove the 13 hours to Baltimore. We stayed with friends (we planned on moving into the Ronald McDonald House once she was born), and I continued to get ultrasounds done to check on our little girl’s progress. John Mark flew back home to work another week until it got too difficult for me to take care of our 16 month old son alone. On October 17, at 37 weeks, I went in for a fetal echo to check on the baby’s heart. I had had several non-stress tests since arriving in Baltimore, and her heart rate and movement were right on target. So, when they started the ultrasound – a procedure I had gotten quite used to – I witnessed the completely unexpected. Her heart wasn’t beating. No matter how hard I tried, I just couldn’t see her heart beating inside her tiny rib cage. That was the darkest moment of my life, and I still shake when I think about it. John Mark was 40 minutes from the hospital and had Jack with him (and I had the car seat), so I frantically called the few people I knew in the town to come get my son so that my husband could be with me. Finally, over an hour later, he was able to be with me in Labor and Delivery. Bernadette was breech, but since she was dead, there was no reason to deliver her via C-section. They induced me, and I delivered her the following day. Labor was a bit surreal. There simply is no way to describe what it’s like to be pregnant but to know that your baby is lifeless within your womb. The hours were long, and I was more scared than I ever thought possible. The epidural didn’t work properly, so the pushing was incredibly painful. I remember repeating “I can’t do this, oh God please, I can’t do this.” I remember praying to Mary, yet at the same time, I felt incredibly alone, abandoned, and terrified How could a loving God allow this to happen? Why wasn’t it enough forHim that she was sick and that she would have had much pain in her life? Why wasn’t it enough for Him that we had packed up our lives and moved to get her the best help possible? Couldn’t He see that she was wanted? None of this made sense! But He was with us all along. When I felt abandoned by Him, he was as close to my heart as He ever has been before.
When Bernadette was finally delivered, I only remember the silence. I kept shaking my head, not believing what was happening. Not wanting to see her because I didn’t want to believe that she was really gone. Since her anomalies were pretty drastic, I asked for them to wrap her up before handing her to me. John Mark was able to see her, but my completely shattered heart simply couldn’t handle it. When they carried her to me, that is when I broke down the most. Why was she taken away from me? Couldn’t God see that there was no safer place for her than in her mother’s arms?
For 2 weeks, I wasn’t able to utter a prayer to God. Going to church felt hollow, and I felt guilty for receiving Communion when I wasn’t even sure that He existed. It took time, but when I learned to accept this unbearably heavy cross, it was like a floodgate of grace that overflowed in my life. In the weeks following her death, some people questioned how I could possibly get up in the morning and go about my day. Many friends praised my strength. But I wasn’t strong! I was an absolute wreck! It was so obviously God’s grace that kept me standing.
Because we were so far from home, we chose to have Bernadette cremated so that we could take her back home with us. It wasn’t something I wanted to do, but we didn’t have much of a choice. It took a week to have the autopsy done, and well, to put it simply, that week was the longest of my life. I spent much of the time curled up in bed, and the rest of the time was spent packing our bags. No words can express the feeling of defeat I experienced while packing up for our trip home. Every piece of clothing, every folder of medical records, every toy to keep Jack entertained, every single thing that was with us was for Bernadette. Every move we had made in the past 6 months was for her, and now we were packing it all up for nothing. Driving home with her ashes in my lap brought on so many emotions – relief that we were leaving the bad memories behind, yet a very strong yearning to stay, to be in that place where I had felt her last movements. That place symbolized hope for us, and driving away from it was as if we were abandoning her.
We buried our daughter a week after we arrived home The funeral was very healing for me, because it reminded me of what life was all about. It’s about serving God on earth, so that we are able to share life with Him in eternity. Bernadette served God in so many ways while she was here…she has touched so many lives and has made John Mark and I better parents to our son. And now she is with God forever. She is with our mother, Mary, and all the Saints. And although I was never able to look into her eyes and tell her how much I loved her, she knows. She knows how much I love and miss her. She knows my sorrow, yet she knows how much deeper my faith is because of her. She knows that we wanted her in our lives so much, but that we are learning to accept that God has a greater plan for her and our family. I often get very sad to think that our son will never get to know his little sister. But then I realize that he will. We will share her story with him, we will teach him to pray to her and to ask for her protection over our family. I am convinced that she is the reason he has blossomed into the wonderful 2 year old boy that he is. She really is our patron saint in heaven!
