Our determined little Rose

Feature member story: Rose
Feature member story: Rose 

Not many people know that babies can have strokes, even unborn babies

This is something neither my husband nor myself knew, or really thought about, until we were faced with the reality that our daughter had a stroke in utero.

I am writing this to raise awareness about paediatric stroke. In doing so, I hope to highlight the importance and trusting your instincts and seeking answers.

I guess what triggered us to think that something wasn't quite right was that our daughter seemed to be developing a very strong preference for her right hand.

She was becoming increasingly difficult to dress through her left arm as she would not stretch out her left side the same way that she would her right, and she always keeps her thumb tucked under her clenched little fingers.

I had people telling me "it's fine, don't worry, that's normal" and part of me wanted to believe them, but as a mother I knew something wasn't right.

Our daughter was born on the 3.3.10, five and a half weeks early, weighing 1.9kg (4lbs 3oz). As a result of her prematurity she spent time in the newborn care centre and we subsequently had follow up appointments with the paediatrician at the hospital - which was a blessing in disguise.

At a visit to the hospital in October 2010, when Rose was 7 months, we mentioned our concerns to the paediatrician. Part of me was hoping he would say "she's fine, don't worry" but that wasn't the case.... 

Instead he said "that's not normal" and we were to wait for an MRI to get some answers.

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So many emotions and yet where to begin... We went home that evening both shaken and not knowing what to think. So many ups and downs, so many questions, so little answers at this point. What was wrong?

Those few weeks of uncertainty were difficult. The general anaesthetic was a scary thought and the results to come were constantly on our mind.

The MRI showed that a part of Rose's brain on the right side, that controls movement on the left, had lost blood supply and oxygen at some point. They believe it was sometime around 28 weeks of pregnancy and told us that she has hemipelegia (a weakness in one side) caused by a stroke. In some ways it was what we were expecting to hear but just that word 'stroke' was frightening.

On reflection looking back at this time of pregnancy,  I thought something was up. I didn't feel my baby moving as much as before and at one of my appointments my growth measurements where not consistent. 

I mentioned this to the midwives and they said "it's normal to plateau out and for the baby to become less active towards the last few weeks". I never made it to another appointment as I went in to premature labour.

How did it happen? Was it because she was early and delivered via emergency Caesarean because of foetal distress? Then the self blame set in and guilt followed. Could I have done anything differently? Did I lift too many things while pregnant? Did I work too hard?

A lady at the park once asked me if the reason why Rose had a stroke in utero, was because of something 'I' did while I was pregnant! 

Honestly don't you think I didn't ask myself that same question, often, and it's not helpful!

Quickly we realised how unhelpful self blame was and after our appointment with the neurologist and we had some information and some questions answered we turned our attention to understanding what we could do about it now that this had happened.

We just wanted to know how best we could help her to strengthen her left side and help lengthen her muscles that were becoming increasingly tight.

We have started seeing a physio as well as an OT and we have had various other appointments with specialists. We have day splints for her hand and leg and a night one too.

Already we can see improvements in her willingness to let us stretch her hand and arm and her determination to try. We focus on the things she can do and not what she is yet to learn.

We are so committed to assisting her and being strong and positive so she feels like this is not a limitation for her but something that will make her stronger.

Rose is such a happy little girl and seeing her smiling face everyday we feel so blessed.

There are moments when I think about the 'milestones' and what this means for her as she tries to crawl or walk and when she gets older and tries to dress herself and tie her shoes, but right now we are focusing on her daily progress and encouraging her along the way. She really is our determined little Rose.

Thanks for taking the time to read Rose's story.

Leave a message for Michelle and Rose on the Essential Baby forums.