"Grief can be the garden of compassion. If you keep your heart open through everything, your pain can become your greatest ally in your life's search for love and wisdom. " - Rumi
In memory of our sweet baby Inayah. May our hearts and souls reunite!
We were both excited to begin our lives together. This was the second time around for marriage for us both and we found peace in knowing that we intentionally approached our courtship with patience. When I looked at him, I was confident that I had done my due diligence and asked all the right questions to prepare for this next chapter of my life - marriage.
It was December 2014, nine months after committing our lives to each other. Two lines confirmed the news - we were pregnant! There was an overall sense of excitement as we envisioned our future as parents. We joked that my Aunt Di’s homemade sweet potato pie, prepared during Thanksgiving, was responsible for our conception. This was such a happy time for us both as we reflected over this new life coming.
Controlling Perspective of an Uncontrollable Outcome
I was blessed with a good pregnancy, no morning sickness or discomfort. I was even able to maintain my exercise regime three days per week. Due to my age of 35, my pregnancy was considered high-risk and at 20 weeks I was referred to a perinatologist, a physician who specializes in high-risk pregnancies. It was during this visit that everything changed. As the doctor rubbed the ultrasound wand against my belly and watched the screen, the serious look on her face concerned me. After moments of silence, the doctor asked me, “Have you experienced any discharge or noticed any fluid leaking over the past weeks?” I responded that I hadn’t and asked her why she asked. She stated that my amniotic fluid levels were very low, a condition called oligohydramnios. Although she couldn’t make any promises, the doctor was convinced that things would be fine and wanted to watch us closely. Once a week, we drove 40 miles to visit the specialist for high powered ultrasounds to monitor the development of our baby. I was also asked to reduce my level of activity and stay hydrated. I followed doctor’s orders faithfully, praying that things would improve. We had no idea about what was in store for us.
The following weeks were filled with hope and anxiety caused by fear of the unknown. We still were unclear about the root cause of my low amniotic fluids. At 30 weeks, an ultrasound finally revealed that our baby suffered from a rare genetic birth defect called bilateral renal agenesis (BRA) which meant that she was missing both kidneys. We now had a name and statistics to confirm her fate. Although she could survive her remaining time in utero, her life would be short-lived. Reality hit us like a ton of bricks. We would never know her outside of my body. There would be no decorating of her baby nursery, no baby shower, no dreams of her future and worst of all—we would not be able to bring her home. We were devastated.
One day, I came across an article about a couple who also experienced carrying a baby with a genetic disease. They embraced the truth of their reality and focused on the gift of the present. I was inspired and chose to use the remainder of my pregnancy to appreciate the time that I had with her.
"She was closer to me than anyone had ever been and I celebrated her life through intentional moments of connection. I talked and sang to her and when she moved I thanked God for the blessing of carrying her."
I realized that I couldn't control how the story ended but I could control my attitude and perspective. I was honored to be her mother and would be strong and endure whatever road had been chosen for us.
7 Hours of the Happiest and Saddest Day
On August 5, 2015, my cesarean was scheduled. The doctors told me that babies with this condition, usually don’t survive the hardship of a vaginal delivery, so I elected to have a cesarean section. After nine months, it was important for me to meet her.
"I needed to hold her, smell her, and kiss her. I wanted her moments outside of the womb to be filled with love."
Inayah Ali was born early in the morning, weighing 4lb 6ozs. My husband cut her umbilical cord and I was able to see her beautiful face before doctor’s whisked her away to run tests that would assess her health.
They wheeled me back to my room to wait. We prayed, we waited and repeated that cycle until the doctor returned to our room to confirm the truth we had feared for months. She wasn’t going to survive. For the next seven hours, we remained in the NICU loving on our daughter. We were able to bathe and take pictures with her. Family members came back, one at a time for their first and last visit with her. After six beautiful hours, the doctor confirmed that her oxygen levels were dropping and that there were signs that time was running short. We made the difficult decision to disconnect her from the machines and allow her to transition naturally.
"Over the next 40 minutes, while in my arms, our daughter slipped away from us. It was the happiest, yet the saddest day of our lives."
Lessons from the Journey
Three days later, our daughter was given a small, intimate funeral service and was buried just a few feet away from her maternal grandmother. I believe that God assigned us this journey to offer support to others that experience the pain from the loss of a child. In addition, we also learned that this process involves understanding our humanity first and tapping into the power of the faith and love that surrounds us. The journey of our daughter was tough but we are grateful for every step of the way as we loved and created unforgettable memories with her.
"She has forever impacted our lives."
Submitted with love by Inayah's mom - Attiyya Mujahid Ali