Situs Inversus with Dextrocadia

A Manchester mum’s story of her child, born with her organs and heart on the wrong side

 

I met Manchester mum Kate Wilde recently and was so taken by her story that I promised to share it.

 

Over to you Kate ……

Life’s obstacles – heart’s in the right place

Kate & Chloe

 

As I’m getting older, I’ve come to realise that everybody has a story to tell.

It could be inspiring, funny, informative but I’m finding out that most people seem to have stories about ‘life’s obstacles’.

Well, I can pinpoint exactly the time and date when mine and my husband’s world in an instant seemed to come crashing down.

 

 

 

Tuesday November 6th 2012 at 11.30am – Tameside General Hospital, this was the day of our antenatal 20 weeks scan of our unborn second child.

 

The sonographer went quiet

 

As a parent at these antenatal appointments, you have mixed emotions anyway. The sonographer at our scan seemed to be extremely quiet, a few moments later we were told that our baby’s heart was on the right hand side of the body instead of the left.

Obviously things quickly whizz around in your head, and then the feeling turns to being numb.

That period was hard for both of us, lots and lots of tests were done over a few weeks. Results started to come in, a few things were ruled out but we still didn’t know what to expect or what was wrong with our child.

 

At 33 weeks

 

Eventually we found out at 33 weeks pregnant that the baby had a condition called Situs Inversus with Dextrocadia, this basically means all organs and the heart are flipped over as a mirror image inside the body.

There are varying degrees of this condition and they all have there own definitions. At this point nothing more could be done and we didn’t know what the outcome would be. We had to just wait until our baby was born. We had great support from our family, friends and they know who they are.

 

Chloe Isabella was born

 

On Monday March 18th at 10.35am Chloe Isabelle was born. She was in neonatal for a few days and we found out she definitely has complete Situs Inversus with Dextrocadia. Along with this she has an ASD and a VSD – holes in the heart.

Chloe is currently being monitored at various departments at The Royal Manchester Children’s Hospital. We are still not sure of the long term prognosis, but she’s here and seems to be doing fantastically!

 

Kate & Chloe

 

Researching Chloe’s condition

 

We tried hard to research the condition before Chloe was born and the consequences of this condition, but we couldn’t really find anything. The information that was about seemed to be extremely scientific. (See the scientific links below).

As a family we needed support and information from an outside source. Eventually we found a Facebook Support group called Total Situs Inversus with Dextrcardia, however this was after Chloe was born. The guys on there are amazing, and the lady that has set this page up has now made me one of the admin managers.

 

Chloe

 

Heart’s in the right place

 

We are now ready to turn a negative situation into a positive one.

Firstly by starting to help raise awareness about Situs Inversus with Dextrocardia as a rare condition. I’m currently working on an awareness website called heartsintherightplace.org.

This will be a place to find basic information within the UK about Situs Inversus with Dextrocardia without being patronising, along with stories and a support network for people living with the condition or who care for somebody that has the condition.

We’re hoping that figures of authority will have more knowledge about the condition once more awareness is put into action. This will be launched mid 2014.

 

My special little monkey

 

For now, we’re reflecting a lot! But we truly are thankful that Chloe is here and doing the usual cheeky things babies do. She’s just about to turn one, and even to this day I call her my special little monkey.

 

Chloe

 

 

Kate x

 

Further sources of information:

Situs Inversus on Wikipedia

rarediseases.info.nih.gov/dextrocardiawithsitusinversus

 

Photographs: Kate Wilde

 

 

 

 

 

 

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2 thoughts on “Situs Inversus with Dextrocadia

  1. Thank you for the post Kate, I have been struggling to find out more about this condition myself and I am finding it exhausting and very emotional. My husband and I just had our 12 week scan and were told baby’s heart and stomach are on the right, and so baby has situs inversus. We have so many questions, how do we know if it is a complete mirror image, will baby have long lasting health problems, does this automatically mean baby has PCD… We have an appointment with a specialist in two weeks and then a cardiac scan in Jan to check baby’s heart. Reading your post and hearing Chloe’s story is so encouraging. Thank you again, Charotte x

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