Living with Spina Bifida |24 November 2017

• ‘She was just a little baby… and we thought she would not make it’

When Kelly Savy was 23 years old, she and her husband were excited to welcome their first child, Eleni, into the world and according to the young couple, none of the ultra sounds performed during Kelly’s pregnancy had indicated any problems, so they did not have the slightest idea of what lay ahead.

Eleni was born with a small sac of fluid protruding from the base of her spine above her buttocks (part of her spinal cord). The following day a neurologist came by to visit them and it was then that they were informed that Eleni has spina bifida – a condition where a baby’s spine and spinal cord do not develop properly in the womb, causing a gap in the spine. This can lead to a variety of problems such as weakness or total paralysis of the legs, bowel or urinary incontinence and loss of skin sensation in the lower body (NHS, UK).

“We were very depressed and thought that it would hinder her potential to excel in life. She was just a little baby when they first operated and we thought she would not make it. According to the neurologist, the main causes are currently unknown, but research has shown that lack of folic acid during the initial stages of pregnancy, genetics and some other deficiencies may have resulted in this, in spite of all the supplements I had been taking such as Pregnacare,” explains Kelly.

During the first few days of her life, Eleni underwent several computerised tomography (CT) scans and it was then that her parents found out that she had one of the most dangerous and rare kinds of spina bifida – myelomeningocele.

Kelly recounts that “the explanations the doctor gave us for the long term was very daunting and depressing. Eleni was operated on 9 days after birth to return the spinal cord back into her spine column. We thank God for Dr Sharma”.

From then on, Eleni was monitored every month by the neurologists and the circumference of her head taken, among other tests conducted. The doctors informed Kelly that there was a possibility that the fluid from Eleni’s spine might travel up into her brain cavity (hydrocephalus) and as a result, her head would grow bigger.

“We were worried all along during these visits in case this materialised and some other complications also came up,” says Kelly. The neurologist advised that by the time Eleni turned three, there would be no further reason to be worried as the risk of this happening would be lower/non-existent.

Kelly explains that as there is no specific treatment for spina bifida, they monitor her spinal development as Eleni grows up through yearly Magnetic Resonance Imaging (MRI) scans. In the unfortunate event of her developing hydrocephalus, she would have to be operated on and a shunt inserted in her head to drain the excess fluid. This would also need to be monitored and perhaps changed over the years, as she grows older.

The neurologist also explained that Eleni would require extra care and attention during her formative years, for example, extra tuition with her studies as the way she assimilates information may differ to that of other children.  

Since there is a slight delay in her speech development, Eleni has had to undergo speech therapy and according to Kelly, because of the great skills of her private speech therapist, Ms. Samantha, she has developed her vocabulary and this has been complimented by the fact that she is keen on watching cartoons and other children’s interactive programmes/games.

When asked how she and her husband cope with Eleni’s condition, Kelly says that their lives are pretty much normal and they worry about her when she is sick, like any other parents would do. “We try to be more vigilant to prevent her from falling or being hit as this can cause damage to her spine but generally we treat her as any normal child her age and encourage her to be independent and do basic things by herself,” says Kelly.

She adds that she and her husband ensure that their family remain happy despite the circumstances by doing things that make Eleni happy and guiding her to be as normal as any other child.

“We pray to God that He keeps her strong and healthy and guides us on how to make her life better with each passing day,” says Kelly. Some of the happiest moments for Kelly and her husband are when Eleni says or does something unexpected which exceeds a milestone in her development. “When she is in good health and is bubbly with this 'joie de vivre' - which is so typical of her in her everyday life. She is always smiling, laughing and greeting or talking to everyone she meets. The hard moments are of course when she is sick…everyone around her notices that,” adds Kelly.

Four years since Eleni was born, her parents are proud when they see her development advancing in a positive way, for example when she is involved in activities at school and when she is treated and encouraged to do more like any other child who deserves praise for the good things they have done.  

However, the family still face some difficulties with the approach of a few people towards Eleni’s condition. Kelly feels that “some of them fail to understand her case and treat her like she is a retard. Those that do not understand are those who are not aware of what spina bifida is about and how parents struggle to try and overcome the obstacles of how to live with a child who has it. I advise people to read and inform themselves about the condition and to think carefully before you say or do anything hurtful. These are human beings with some special needs”.

She adds that others who have read up on different types of spina bifida are sympathetic to their case and share with them her daily achievements. Kelly finds that most people are very encouraging and take part in Eleni’s life to help her grow and develop normally. She recounts that at her school ‘The Trotter’s Stop’, where Eleni was accepted without any discrimination towards her condition, they try their utmost to understand and help her grow just like any other kids her age.

Kelly’s advice to other parents who have children with the same condition is to give them as much extra love and care as you can, encourage them to live a normal life as much as possible within their own capabilities and take part in any activities they can cope with.

When asked what her dreams and wishes for Eleni are for the future, Kelly hopes that she continues to develop for the better and that she exceeds the limitations placed on her because of what she was born with.