Danielle Walker, the author and photographer of the bestselling cookbook Against All Grain was diagnosed with a rare autoimmune disease when she was 22-years-old. At that time, she began removing all grain and dairy from her diet and became known for her blog, which she created to help others suffering from similar ailments continue to enjoy food.
In January, Danielle and her husband found out they were expecting their 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.”
After the diagnosis, Danielle decided to have a friend photograph her pregnancy so that she could remember the serenity of her pregnancy and Aila still alive. She also said she wanted to celebrate the time that she had with her daughter.
Danielle said in her blog, “As a family we were able to take her and Asher to Disneyland, a baseball game, lots of hikes in the hills surrounded by oak trees, and many family barbecues and swimming time. She spent mornings snuggling on the couch with her brother and I watching cartoons. She knew the sound of my voice singing songs throughout the day. She perked up anytime her daddy would enter the room and was always willing to let him know she was still there with a little kick from her sweet little legs.”
She and her husband also received information from hundreds of people about a non-profit called “Now I Lay Me Down To Sleep, which connects parents who have just lost a baby with photographers who want to donate their services, giving them the gift of “remembrance photography.” At first Danielle was unsure about having a photographer with her family on such a painful day of their life, but after reading other family testimonials, decided to have the pictures taken.
Aila was born three months premature on June 24th at 7:53 pm. She weighed a tiny 1 pound 5.8 ounces and passed away at 8:39 pm, only 46 minutes after her birth. But Danielle and her husband have no regrets and fell deeply in love with their daughter during her short life.
Danielle concluded, “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.”
LifeNews Note: Photo credit Today.com.