As we look at those life changing moments we speak to one mum who’s world was turned upside down when her unborn child was diagnosed with a condition she knew nothing about and couldn’t find much information to help her either. Now she is working to change that for other families who discover their child may have their heart in the wrong place! Here is Kate and her families story:
We know only too well as a parent at antenatal appointments, you have mixed emotions. Our story is one that is a rollercoaster of a ride, but please, we’re not trying scare people who are expecting or have just become new parents.
We’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 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 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 and 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.
Eventually we found out at 33 weeks pregnant that the baby had a condition called Situs Inversus with Dextrocardia, 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 or we could not 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.
One of our main forms of support was from our 4 year old little girl Emily, she didn’t have a clue of what was going on or happening. But her just being herself, really did help us get through a difficult period.
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. She is currently being monitored at various departments at Manchester Royal Children’s hospital. She is also being tested for a respiratory condition called Primary Cilary Dyskinesia or PCD for short. You can find more information about this condition at http://www.pcdsupport.org.uk. We are still not sure of the long term prognosis, but she’s here and seems to be doing fantastic!
We tried hard to research the condition before Chloe was born and the consequences of this condition, we couldn’t really find anything out. 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 Dextrocardia 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.
We are now ready to turn a negative situation into a positive one. First off by helping to start to raise awareness about Situs Inversus with Dextrocardia as a rare condition. We’re currently working on an awareness website called www.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 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.
I’m also working on a collaboration project with my sister and a colleague, creating a children’s book about a monkey and an elephant, which will be launched towards the end of this year. This book will not only help raise awareness of Situs Inversus with Dextrocardia but hopefully raise a little money for a chosen charity of ours related to heart conditions.
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 has just turned one, and even to this day I call her ‘my special little monkey’.
Twitter:
@heartsintherightplace
@milesandmonkey
Facebook:
https://www.facebook.com/pages/Total-Situs-Inversus-With-Dextrocardia/307435789455
More about the condition:
http://en.wikipedia.org/wiki/Situs_inversus
http://rarediseases.info.nih.gov/gard/6268/dextrocardia-with-situs-inversus/resources/10
