Grace's Story
In January this year, ten-year-old Grace went to school, then on to hip-hop dance class, did all her homework, made her own fruit salad before jumping in the car to go to gymnastics. She was all chat in the car about school and the places we would travel to if we won the lotto. Grace bounced into gymnastics chatting to her coaches about her upcoming competition.
Grace did her full warm-up and then went over to the beam. She was very confident on the beam, but her coach noticed she was having difficulty getting onto it. She sat down, started crying and holding her head. She then began to have a seizure. Grace had never had a seizure before.
Fortunately, her gymnastics coach is a doctor in St Vincent’s hospital. She recognised the signs of stroke at once and contacted the emergency services straightaway.
Ambulance crews arrived and stabilised Grace and brought her to Children’s Health Ireland at Crumlin. Grace was still having seizures in A&E and a CT scan showed a bleed on the left side her brain. She was then transferred to Children’s Health Ireland at Temple Street for emergency brain surgery.
Prof. Darach Crimmins was the neurosurgeon on duty that night. After the surgery, he spoke with both of us, Grace’s parents, starting with;
“What I’m going to tell you is every parent’s worst nightmare. Grace is a very, very sick little girl.”
They had found a bleed in the left lobe of Grace’s brain. They think it was caused by a birth defect, or malformation called an Arterial Venus malformation (AVM). It could have erupted at any time, but it decided to erupt that day. The next 12 hours were critical. The AVM was too deep to surgically remove, so they placed drains into Grace’s head to help remove the bleed and fluid. She was placed in an induced coma to help her brain stabilise.
Four days later, Grace opened her eyes for the first time, she followed a balloon with her eyes so we knew she could see. She could only move her one hand and had no speech. She started communicating by using her left hand; thumbs up for yes and thumbs down for no and was being tube fed. She was bedridden due to the two drains in her head.
All the staff in St Gabriel’s Ward were so friendly, warm, and welcoming to both Grace and us, as parents. Prof. Crimmins explained Grace would possibly need radiotherapy to shrink the AVM.
Two weeks later, Grace said her first words “hi” and “I love you”. Then a couple of days later, her first drain was removed.
“The toughest part for us as parents with a child in hospital, was not just feeling helpless when Grace was in ICU, but also feeling the guilt of not being present for our other children at home”.
Shortly afterwards, they removed the second drain and Grace was able to use the hoist, as she now could move from the bed. It was also our first experience of seeing Grace, our previously healthy, strong, active daughter, now in a supportive wheelchair, but we knew this was progress from being bed-bound.
As Grace was wheeled down the corridor of St Gabriel’s Ward, all the staff came out, stood as a guard of honour, and clapped for Grace. This was a hugely emotional experience for all of us. The wheelchair gave Grace much more access to the hospital services such as a school room and therapy rooms.
Grace’s recovery continued to go from strength-to-strength. Physio, Karen, Occupational Therapist, Siobhan and Speech and Language Therapist, Bronagh, all worked so hard with her. Grace spent nine days in ICU and fourteen weeks in total in Children’s Health Ireland at Temple Street.
‘Grace was so lucky to have met such a wonderful, kind, and dedicated staff. As parents, we felt so supported by all the fantastic staff in the hospital.’
Grace’s physical recovery continued to improve and in May, Grace was discharged from Children’s Health Ireland at Temple Street. The staff of St Gabriel’s ward held a goodbye party for her. She was allowed to rub her name off the patient list on the board and walked out of the hospital using only a crutch.
She still had limited mobility on the right side of her body, but she could walk small distances using her crutch. Grace then began her ten-week journey in the National Rehabilitation Hospital. She is currently awaiting Gamma Knife radiotherapy treatment in Sheffield UK to shrink the AVM still in her head. Her physical recovery continues each day, she is getting stronger and stronger.
