'My daughter was 16 months old when a stroke changed her life'
MY beautiful daughter Lilly is not what you expect when you hear the words 'stroke survivor'.
Until eleven months ago, I would not have believed it either. I associated stroke with older people, but Lilly was just 16 months old when a stroke changed her life - and ours - unexpectedly.
Lilly has always been a happy and loving child. Like all first time mums, I adored watching her grow, meet her milestones and play peek-a-boo and hide and seek with her older half-siblings. Lilly was developing well and there were certainly no alarm bells.
Then one day Lilly fell over while playing. She began to cry. Naturally I picked her up to comfort her, but the tears kept coming.
My partner Sean and I noticed her arm was limp so we took her to hospital. We thought she might have broken it when she fell, but we were way off the mark.
Lilly continued to cry and wouldn't let us put her down. A doctor assessed her and she had an x-ray. We were told there was no break, but it could be a fracture. Lilly's tiny limp arm was placed in a sling and we were told to go home and come back in a week.
The next day I went to have morning cuddles when I noticed the right side of Lilly's face had drooped and she wasn't using her right arm or leg. This worried me and I called the hospital. Although I was told she would be fine, something just didn't feel right.
I wasn't going to give up. I took Lilly to our local GP. Even though I knew something was wrong, I was shocked when he said he thought she'd had a stroke. From there, we went straight to hospital. I am so glad I listened to my gut instinct.
Lilly had a CT scan on her brain, but also needed an MRI. Unfortunately the hospital was not able to perform this scan, so Lilly stayed overnight and the next day we were flown from our home town of Mackay in regional Queensland to a children's hospital in Brisbane. All this time we were questioning what was happening to our little girl. It was so frightening.
In Brisbane, we had another agonisingly long wait on our hands. While the scan was done quickly, we didn't get the results until the following morning. It was impossible to stop my mind from racing. I just didn't know what to think.
When the doctors came to see us the following day, they confirmed Lilly had suffered a stroke. I burst into tears. I had no idea children could have strokes.
The cause of Lilly's stroke was not clear. The doctors were not able to find a blood clot in her brain scan. However they did find brain damage and we were told to expect Lilly would have some physical challenges to contend with in the future.
Lilly stayed in hospital for six days. She was put on a drip, but her fighting spirit saw her up and about soon, moving around the ward. When Lilly was discharged we took the lengthy 12-hour trip back home, but still had no answers about why this had happened to our little girl or what Lilly's stroke would mean for her future. This was incredibly tough.
Since Lilly's stroke, she has faced so many challenges head-on. With the support of a physiotherapist, she's learned how to walk again, how to use her arm and leg, and how to swallow. I am so proud of her.
Lilly will be on medication for two years and continues to have regular physiotherapy and occupational therapy for the muscles in her right hand and right foot.
Today, Lilly can walk, but does so on her tippy toes. She can eat and talk okay. We are working hard to give her every opportunity to recover.
Along with Lilly, we take each day as it comes. We are thrilled with every small achievement. She is one determined little girl and she knows how cute she is and uses it to her advantage!
Lilly's stroke turned our lives upside down, but we are so thankful for the huge support we have received from family and friends.
My reason for sharing Lilly's story is to tell as many as people as possible about childhood stroke - and to remind health professionals it can happen, so that other people don't experience a delay in diagnosis like we did.
Lilly displayed the F.A.S.T signs of stroke. I urge everyone to learn this simple test and act quickly if you ever think someone around you is having a stroke - no matter how old they are. You may save their life.
Ask these questions:
- Face - Check their face. Has their mouth drooped?
- Arms - Can they lift both arms?
- Speech - Is their speech slurred? Do they understand you?
- Time - Time is critical. If you see any of these signs, call 000 straight away
- Stroke is among the top ten causes of death in childhood with the highest mortality in the first 12 months of life.1
- The incidence (number of new cases per year) of stroke is around 2 per 100,000-population.
- Approximately one third of all cases occur in children less than one year of age.
- Stroke affects between 1 in 2,300-5,000 newborns.
- 50-85% of survivors of stroke will be left with long term problems which may include seizures, physical disability, speech or learning difficulties.
- 20-40% of children have recurrent strokes.
- The burden of stroke in children is likely to be greater than in adults because children surviving stroke will have more years living with functional limitations and disability.
- A prospective web based stroke registry has been set up by the International Paediatric Stroke Study Group (IPSSG) to provide important information about the incidence, treatment and outcomes of childhood stroke. Australian centres are involved in this collaboration. For example, the Royal Children's Hospital in Melbourne is one of the largest contributors to the registry with 130 children enrolled since August 2002 (about 30-40 children per year with newly diagnosed stroke).