My little girl is a stroke warrior
Most people think stroke happens to old people, but I am here to tell you that it can happen to anyone or any age, even babies. My little girl Emma is two and a stroke survivor. She is a stroke warrior.
Emma was born at 41 weeks gestation. A beautiful healthy girl, weighing 8 pounds 7 ounces (3.8 kilograms). Emma passed all her health checks in hospital with flying colours. She did struggle to latch on to the breast to feed (looking back now I know why it was so hard for her) but it wasn't uncommon for a mother to find her feet with breast feeding. At that point there was no cause for alarm.
As time passed, Emma continued to develop normally, and although she protested tummy time (like so many), she passed every check up.
It was when Emma was nine-months-old, I noticed she had a preferred left-hand. Emma would eat finger food with her left-hand but her right-hand and arm had dropped. When we played on the floor she didn't grasp or reach with it, she didn't lift her knees at all and while babies in my mother's group were crawling or about to crawl, little Emma wasn't even close. It was the gut feeling, the maternal instinct that drove me to make an appointment and have her checked out, just to be sure.
Our maternal child health nurse saw Emma and noticed the lack of strength in her right side. -Don't worry' she said, -it's probably just a strength issue, nothing a bit of physio won't fix'.
While sitting in the waiting room for the physio, I remember seeing mums with kids who had children with mild to severe disabilities and thinking to myself, 'wow that must be tough". The mum's faces were full of hope, love and pure exhaustion. I never ever thought I would be that mum.
From the physio we saw a paediatrician, then a second paediatrician, and then a neurosurgeon. The neurosurgeon confirmed Emma had suffered a stroke in utero and as such a very large cyst or cavity had formed in her brain. My beautiful baby had a brain injury. The area of the brain damaged was the part that controlled movement on Emma's right side and her speech.
This tiny precious brain with this huge mass, I remember looking at her and thinking how are you alive? How does a child survive such brain damage? How could this happen to my sweet Emma?
Then came more questions. Will Emma die? Will she walk? Will she have emotional intelligence?
Doctors told me if Emma's brain injury had shown up on any of my prenatal scans, I would have been advised she was incompatible with life, I would have been advised to terminate the pregnancy.
The neurosurgeon observed Emma and couldn't believe how well she functioned; crawling, talking, pulling up to stand and taking emotional and social cues. He described Emma as phenomenal – something we already knew.
Today Emma is two, and recently scored 82 out of 100 for her typical 2 year old check-up - only losing points for not being able to walk. It takes work. Emma has physiotherapy once a week, occupational therapy fortnightly and speech therapy every three months just to ensure she is still on track as the part of her brain that controls speech is completely missing.
Throughout this journey, I have learnt a lot about love, hope and patience. I am grateful for everything our sweet girl has achieved and will continue to support her in any way I can to help her become the best version of herself. The word -can't' is never used in our house. Our goal as parents is to help Emma believe that she can do anything she puts her mind to.
Her neurosurgeon said to us: 'If Emma wants to be a brain surgeon one day, never say she can't, if she wants to fly a plane, don't ever say she can't. You as parents have to help her to believe anything is possible." This will be our mission.
I am also committed to helping Stroke Foundation bust the myths surrounding stroke. Most people think stroke is an older person's disease but it impacts people of all ages. There must be greater awareness of the signs of paediatric stroke. Emma had been carrying these signs for a few months before I had noticed anything was amiss. Many parents go through this with their child, where there is a delayed diagnosis and it can mean some early intervention opportunities are missed.
As for Emma, she continues to defy all odds against her.
Emma can crawl, talk in sentences and is almost walking independently. She is about to start botox treatment in her hand and arm. We don't know what the future holds, but with her one thing is for sure, it will be bright. She is the sunshine of our life.
By Dee Honeychurch
May is Paediatric Stroke Awareness Month. Every year about two children in every 100,000 will have a stroke. Strokes can occur in all age groups – from newborns to older teenagers. Sometimes strokes occur in babies before they are born with an estimate of one newborn in every 2,300 – 5,000 having a stroke.
To find out more about stroke visit www.strokefoundation.org.au
Question: Thank you for sharing your blog with us; why is it important for you to share your families experience with Australians?
Dee Honeychurch: It is important that Australians realise stroke is not just an older persons disease. It can happen to anyone at any age and its impact on the survivor and their loved ones is far reaching. For our little girl her strokes impact will last a lifetime.
Question: What do you hope readers take from your blog and story?
Dee Honeychurch: Greater awareness of paediatric stroke, I hope they can see that no matter what life throws at them, it is important to never give up.
Question: What can Australians do this Paediatric Stroke Awareness Month to support families such as yours?
Dee Honeychurch: Donate to the Stroke Foundation to help in the fight against stroke and support stroke survivors in the community. I think there needs to be more awareness about social inclusion with children and adults who suffer a disability. Not all disability is visible, during rehabilitation at our local pool we have been asked many times to get out of the hydro pool because Emma doesn't 'look' disabled or injured.
Question: Where you aware of the statistics of stokes in newborns prior to Emma's diagnoses?
Dee Honeychurch: Not at all. We have no family history of stroke. I always thought stroke was something adults suffered. There is no prenatal testing for it or an assessment of risk. I also believe that parents and caregivers need to informed that stroke can occur in infants and children.
Question: What advice do you have for the friends and family of parents who may be in a similar situation, to you?
Dee Honeychurch: For parents, the road is long and at times bumpy but neuroplasticity is a wonderful thing. Emma has managed to create pathways in her brain in order to function. We use therapy in almost everything she does, we try to make it as fun as possible. Don't give up and don't say no to help. My family and friends are incredibly helpful, we get them involved, educate them about your Emma's disability and therapy, they love to see her meeting milestones and knowing they played a role in helping her achieve them.
Question: Where did your family find support after Emma's diagnoses?
Dee Honeychurch: The Stroke Foundation has provided us with information, support and helped by connecting us with other families of young stroke survivors.
Question: Can you tell us a little bit about how Emma is today?
Dee Honeychurch: Emma can crawl, pull herself up to stand, talk in sentences and is almost walking independently. Her personality is warm and friendly. She is about to start botox treatment in her hand and arm. We don't know what the future holds, but with her one thing is for sure, it will be bright. She is the sunshine of our life. As the great Mohammed Ali said 'impossible is nothing' and we aim to show her that.
Question: What message do you hope we take from your blog?
Dee Honeychurch: Most people think stroke is an older person's disease but it impacts people of all ages. There must be greater awareness of the signs of paediatric stroke. Emma had been carrying these signs for a few months before I had noticed anything was amiss. Many parents go through this with their child, where there is a delayed diagnosis and it can mean some early intervention opportunities are missed. It's important to never give up, although there are moments that challenge you, it's important to stay positive and help your child become the best version of themselves.
Interview by Brooke Hunter