Grace was diagnosed with spina bifida at our 20 week scan. The Drs were very uncertain as to a prognosis for her and advised us to consider ending the pregnancy, as the pregnancy progressed Drs became concerned about the amount of fluid in her brain and she was diagnosed with hydrocephalus. We knew at birth she would be rushed to Birmingham Children’s Hospital for emergency treatment. Grace is one of twins and she and her twin Harry were born at 35 weeks due to complications with Harry. She was taken immediately by critical care ambulance to be operated on by the neurosurgeon at Birmingham, she never even had time for a cuddle with mom or dad before she went and was a very poorly baby and weighed 4lbs 3oz.
Grace had her first surgery at one day old to close the lesion in her back, she didn’t meet her mom or twin until she was a week old. Grace was kept in hospital for ten days before being allowed home, at three weeks old she had brain surgery to insert a shunt into her brain. Her shunt keeps her brain from becoming damaged, without it the fluid would build up in her head and she would be permanently brain damaged. Grace started her first physiotherapy session at 6 weeks old and had regular weekly therapy for the first year of her life. She didn’t meet her milestones for crawling, sitting or walking but instead learned to talk and we could have real conversations with her. At 18 months old Grace got very poorly and tests revealed her shunt was not working and so she had more brain surgery to remove and replace it. During the first few years of her life she was in and out of hospital with infections and undergoing procedures but she developed a real little personality, she was a real diva. When she was three she had more surgery, this time to remove a bony spur that had grown through and caught her spinal cord, within days of this surgery she took her first steps. Grace learned to walk, she can’t walk very far before becoming tired so she uses a wheelchair to help her get around. Grace is going to have more surgery in the new year. Over time it has become clear that her bowel and bladder are not functioning as they should be and we have exhausted all other treatment so the surgery is now our only option in order to save her kidneys from permanent damage.