A couple from West Yorkshire in the UK have gone public with their reason for terminating a pregnancy at 22 weeks.
They are trying to raise awareness and money for the charity, Action Medical Research , the leading UK charity funding vital research to help defeat the diseases that devastate the lives of sick and disabled babies, children and young people.
Following two-and-a-half years of trying to get pregnant and several rounds of fertility treatment, Jane and Mark Dodson finally conceived.
When they went in for their 20-week pregnancy scan to check on the progress of their baby, Amalie, they were told that something wasn't quite right.
That's when they found out that doctors had concerns about Amalie's spine and brain, there was a good chance that she had Spina Bifida. According to the Mayo Clinic , "Spina bifida is a birth defect that occurs when the spine and spinal cord don't form properly. It's a type of neural tube defect. The neural tube is the structure in a developing embryo that eventually becomes the baby's brain, spinal cord and the tissues that enclose them." In babies with spina bifida, a portion of the neural tube doesn't close or develop properly, causing defects in the spinal cord and in the bones of the spine.
"Ahead of the 20-week scan everything was perfect, we felt like the luckiest people in the world and we’d already found out she was going to be a girl," Jade told Mirror Online .
In a follow-up appointment, the worst was confirmed. Amalie had the kind of Spina Bifida that would likely mean she had full paralysis of the legs, urinary and bowel dysfunction and learning difficulties. Spina Bifida affects around 1 in 1,000 babies and Amelie was diagnosed with the most severe form of the disease, Myelomeningocele. Amelie would need an operation as soon as she was born, and a shunt attached to her brain which would always be at risk of becoming infected and causing further brain damage.
The couple was devastated. In what is by far the most difficult decision they had ever faced, Mark and Jane decided to terminate the pregnancy in order to free Amalie of the inevitable pain and suffering she would have endured throughout her life. At present, it is not known what causes Spina Bifida in the early stages of the development of babies.
The decision was not met lightly. Jade said: "It was a very difficult decision that we had to face and at every point we always considered what would have been best for our daughter."
"We know how amazing life can be and knowing that Amalie’s life would have been so limited was truly devastating to imagine. We love her so so very much and we always will, but bringing her into the world for her to live a potential and likely life of uncertainty, disappointment, caution, worry, upset, hospital appointments, fear and pain was too much to bear. We felt this was the best thing ethically for Amalie. Our decision was made entirely for her."
On January 4, the family mourned baby Amalie and said goodbye at her funeral. They decided to come forward with their story in order to help raise the much needed funds required to provide continued research into the future prevention and treatment of Spina Bifida and other neural tube defects.