Danielle Walker is the author and photographer of the New York Times bestselling cookbook Against All Grain. Diagnosed with a severe autoimmune disease at the age of 22, she has since removed grain and dairy from her diet, and started her blog to help others suffering from similar ailments continue to enjoy food. Here, she opens up about the recent loss of her second child, Aila, and how her family is healing.
After struggling for many years with my health, I was beyond thrilled to find out in January that my husband and I were expecting our second child. I had been in remission from my autoimmune disease for three years and this pregnancy, as well as our new home, seemed to symbolize embarking on a new, happier time.
Once I passed the initial “danger zone” and transitioned into my second trimester, we proudly announced the pregnancy to my readers, in conjunction with an announcement of a brand-new cookbook. The book was set to be released on Sept. 2, and the baby — a little girl we chose to name Aila Jane — to arrive Sept. 21. It all seemed too good to be true.
But at our much-anticipated 20-week ultrasound, we were told that Aila had severe growth defects and potentially a life-threatening form of a skeletal disorder. After declining the immediate recommendation that we end my pregnancy, we decided to seek a second opinion and get a clearer diagnosis.
There, we were told the unfathomable news that Aila had what’s called lethal osteogenesis imperfecta, known as OI Type II — a genetic mutation that causes a lack of collagen in the bones so they do not grow properly and break over and over again in the womb. The doctors told us that very few of these babies are born alive, and the ones that are only live for minutes or hours.
We chose to carry our daughter until she was ready to make her way into this world on her and God’s timing. It was one of the darkest times in our lives and far worse than anything I had ever walked through. I lost twins to a rare complication called a molar pregnancy at 10 weeks before my son Asher was born, and even then, I couldn’t have imagined anything worse. Yet this was far, far, worse.
But instead of focusing on the fact that we would certainly not get to spend time with our daughter on Earth, we chose to put every effort into enjoying her time in the womb. To be grateful for the time we were given to be her parents, even if the days were numbered. We wanted to be strong for Asher and continue to have joy and laughter.
During those eight weeks, we grew so deeply in love with our daughter — with each kick and movement, and with each ultrasound. I also asked a friend and photographer, Jennifer Skog, to take maternity photos of me so I would always remember the serenity of pregnancy, and Aila still alive.
After we learned the news about Aila’s condition, hundreds of people told me about “Now I Lay Me Down To Sleep,” a non-profit which pairs parents who have just lost a baby with professional photographers who want to donate their services, giving them the gift of “remembrance photography.” I connected with one of their photographers, telling her that I was due in September and that our daughter was not expected to live, and so we wanted to have professional photos of her to remember her by.
At first it seemed to be a strange thing to want. We knew that it would be a very painful day when we lost her, and to have a stranger in the room with our family taking photos of our intimate moments seemed counterintuitive. But after reading other families’ testimonials and seeing how beautiful the photos were, we decided we had to have them.
Our darling Aila was born three months premature on June 24th at 7:53 pm and passed peacefully in my arms at 8:39 pm. She weighed 1 pound 5.8 ounces and had her brother’s nose and daddy’s lips. She was just the most beautiful thing I have ever seen.
We had the immense joy of knowing Aila on this Earth for 46 minutes. The hospital allowed me to hold her for 12 hours and I was able to study her sweet face all night long. The pain that we feel from missing her each day is inexplicable. I ache for the day when I can kiss her forehead and hold her in my arms again.
But we are simultaneously walking through each day rejoicing in the privilege of being parents to Aila for her short time here, and that we got to meet, cradle, and kiss our sweet daughter before she was gone.
It has been 11 weeks since she was born, and I continue to stare at those photos daily. I have not a single regret that we had them taken, and am so grateful for the gift of her precious memory through photos. I went back and forth on whether or not to share the details of my pregnancy, birth, and photos with my readers, and I am grateful I did, because her memory lives on through them. Millions have now read Aila’s story and it’s both heartbreaking and comforting to know just how many women have struggled with similar loss.
This is something not often discussed in public, because it’s uncomfortable and easier left forgotten, but anyone who has gone through the loss of a child is bursting inside to share their memories of their babies and relate to someone on the same level.
Some days, it feels like it was all a dream. Like she was never here. But the photos remind me that she was. The days are much easier now, but most nights, my entire body aches from missing her so much. There is still a void on my chest from where her little 1.5 lb body impressed upon it on that special night.
Sometimes I focus on the possibility of having more kids in the future, while on other days, the thought of having more is impossible because no one will ever replace her, and all I want is her. I keep her memory box from the hospital nearby and her pictures on my phone for the multiple times during the day when I just want to reflect and be reminded of how amazing she was. And is.
I don’t ever want to forget her, and I know that I never will, but getting back to the day-to-day provides hope for our future. It allows me to focus on all of the positive things we have and take the time to grieve when I’m ready, instead of the grief running me. The good days seem to be coming more frequently as time goes. There’s more joy, more laughter, more hope.
I hope that by sharing Aila’s story, I can provide at least one person comfort to know that they are not alone in struggling with something that is not often talked about. She has a legacy here that will never be forgotten, and that is enough to make any mama proud.
You can find more of Danielle Walker's writing and recipes on her blog, Against All Grain. The Walkers were deeply impacted by a few compassionate organizations during their journey with Aila, including "Now I Lay Me Down to Sleep," and have set up a charitable foundation in their daughter's name with these organizations listed as the beneficiaries. Find more about that here.