December 13, 2011 12.11 pm This story is over 149 months old

‘My baby’s disorder was incompatible with life’

Raising awareness: A local woman set up a charity after losing her baby to a rare brain condition.

A woman from Lincoln has started a new charity to help raise awareness of a cephalic disorder affecting the brain development of babies in the womb.

Rebecca Elliott (23) has started Anencephaly Awareness UK, a charity dedicated to raising awareness and offering support to parents affected by the condition.

Anencephaly is a neutral tube defect, which occurs when the cephalic (or head) end of the neutral tube fails to close, resulting in the absence of a major portion of the brain, skull and scalp.

Infants with this disorder are born without both a forebrain and a cerebrum, which can in many case rules out the possibility of ever gaining consciousness. They are also usually blind, deaf and unable to feel pain.

Most babies with the condition do not survive birth, with only a few exceptional cases surviving.

Devastating experience

Elliott started the charity in June 2011 after suffering her own experience of the disorder last year. In September 2010, she and her husband, Matt, were told that their daughter Madalin had anencephaly, and would not be able to survive once born.

“We were told by the doctors that this condition was not compatible with life and that she would either die in the womb or just after birth. We were given the option to carry her to full term or be induced the following week.

“It was the hardest decision we have ever made, and with a heavy heart and many tears we chose to terminate the pregnancy knowing that she wouldn’t survive.

“My husband and I were absolutely devastated. I had to have two months off work to come to terms with things and be able to control my emotions enough to be back in the office.”

Raising awareness

Although there is no cure or standard treatment for anencephaly, it can be prevented by taking an increased level of folic acid in the three months prior to trying for a baby.

Speaking about the new charity, Elliott said: “I have [spoken to] people all over the UK who have been affected by anencephaly who want to help raise awareness, and I plan to have awareness campaigns and events going on across the UK.”

She added: “We had our first charity event on October 28 in the Bricklayers Arms in Old Leake Boston, where we had a sponsored wax for some very brave men joined with a Halloween party where we raised over £1,000 to purchase awareness merchandise.

“Once the new year arrives I will be looking to some of the other families affected by anencephaly to help organise events in their areas, as well as doing one in my own.”

Meanwhile, Elliott and her husband have remained optimistic and are now expecting another child.

“I am currently 16 weeks pregnant with a healthy child. We found out on Madalin’s birthday in September that we were expecting again. It’s very hard and I am a nervous wreck about this pregnancy, but I know our little angel is looking down on us.”