Christina Kelly

Chirstina had her first healthy son in 1992. She buried her stillborn baby boy born full term in 1994 and Charlotte was born in August 1996 with spina bifida.

We were prepared due to a scan in the last few weeks before her birth. Charlotte's spinal cord was exposed at the lower of her back. It was 3cm by 4cm. The neurosurgeon decided not to operate to close Charlotte's back. She returned home in my care and in October after careful dressings the opening closed and fluid began to build causing hydrocephalus. Charlotte had a shunt put in. There were numerous shunt operations in the first year before one seemed to work, although that had a swelling the size of a hen egg.

At the age of 3 and a half years the shunt poked a blood vessel and caused a bleed in her brain. Charlotte went into a coma and had immediate surgery to remove and replace the shunt on the other side of her head. All of her life Charlotte lives with numerous issues including incontinence, scoliosis, inability to walk, lack of sensation, learning difficulties, pain and more!

holding handsIn my memory I had been taking folic acid but stopped not really understanding the possibility of the outcome without it. I was not taking folic acid at the time of conception until about 5 weeks of pregnancy I went back taking it on advice from my GP. I would advise all women to take folic acid.

Charlotte is a lovely 18-year-old girl. She got involved in inclusive sports and loves to swim. She is a creative nail and beauty enthuasist and is to commence an ITEC course this autumn. She is also keen to socialise with her friends but faces accessible challenges daily. She has had spinal rod surgery and endured numerous infections. Our family vacations need to consider Charlotte's capabilities and I find our family has faced many challenges, but we remain strong and supportive of each other and always overcome challenges.

Spina bifida and hydrocephalus brings a diverse amount of challenges. Overnight the parents become a carer and need a tremendous amount of support from our childs birth to adulthood. It's tough going for all involved.

“Thank you to the families for sharing their stories. We have changed their names in this interview at their request”