Our toddler daughter is a stroke survivor

By Karli 

Our toddler daughter is a stroke survivor. These are words that I never expected to come out of my mouth. Like any parent you hope for sunny skies and smooth sailing. We’ve learned that life throws up curve balls when you least expect it.

It was November 28, 2017 when our 6-week-old daughter, Anthea, woke up screaming and we immediately knew something was terribly wrong. We initially thought it was colic and tried everything we knew to settle her. Absolutely nothing worked, in fact her screaming was got worse.

We got her out of the bath and when drying her noticed that she felt cool to touch, but at the same time she was sweating – we found her temperate was only 32.8!

Then we noticed her eyes were rolling back in her head and her face was drooping. We were still questioning ourselves, but we got into the car to take her to emergency. If it was colic, we could just come home.

During the 15-minute car trip to the hospital Anthea became unresponsive. I tickled her feet and talked to her to keep her conscious. I have never been so petrified in my life. My husband was trying to keep his eye on the road and on us, while I tried to keep our daughter alive - it all happened so fast.

It was all systems go when we got to the hospital. The paediatrician ordered routine bloods to rule out sepsis which was his first thought. All bloods came back clear, so he called for an emergency air lift to the children’s hospital which was 40 minutes away by helicopter.

We were asked to say our goodbyes as the medical team did not know if our daughter would survive.

She had to be intubated and have multiple venous access points to transport but being so little they were unable to get enough cannulas in place and they opted for an intraosseous cannula. This is extremely painful, but scarily she didn’t flinch at all. 

Finally, the retrieval team arrived and did what they needed to and took her to Brisbane. My partner and I made our way by road. We were so frightened, we called family, talked to medical staff, cried and tried to control the rising panic in our stomachs.  

She arrived at midnight, which was too late to have many of the tests done immediately. They were able to do a bedside ultrasound which showed significant fluid on the brain. An MRI the following morning showed she had suffered a significant haemorrhage in the cerebellum which subsequently caused retinal haemorrhages. She was immediately taken for blood transfusions and surgery to drain the blood. It took 8 hours. 

Our baby daughter was in hospital for three weeks and it was a huge relief when she came home. We were told she would largely be unaffected by the stroke, developmentally or neurologically. However, she would have significant eye sight damage due to the retinal haemorrhages. The severity would be unknown until she was older, and she could verbalise what she could see.

Initially Anthea was on a feeding tube, but that lasted only a few weeks before she pulled it out and wanted to feed from the bottle. A few weeks after that she was back on the breast. 

I took that as a very good sign and began to realise just how tenacious our daughter is. Our little girl has not missed a beat and takes on daily challenges with such energy.

Now only a year or so later ‘Miss Nearly Two’ surprises us constantly. Anthea has some vision, although it’s unknown to what extent. She crawls everywhere and is on the road to walking. Her speech is slightly delayed but progressing well. 

We want to say to other parents if they find themselves on this journey to talk to everyone that you can. Ask lots of questions – don’t second guess yourself – ask, ask, ask, and push, push, push if you don’t think it sounds right.

Finally, if you’re in the middle of it and your mind is spinning, take 5 minutes to breathe, it can get overwhelming.