Home Rainbow’s Journey – DiGeorge Syndrome (22q11.2DS)

Rainbow’s Journey – DiGeorge Syndrome (22q11.2DS)

When Rainbow arrived in August 2015 by Emergency Section, I knew this little Lady would rule the roost.  She would do things her own way; we would be wrapped around her little finger.

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What I didn’t know was that Rainbow would turn our lives inside out and upside down… 

The day after her arrival, a heart murmur was found… Quickly followed by an echocardiogram and a diagnosis of Tetralogy of Fallots. 

4 days later we were told that it wasn’t ToF but a large Muscular VSD that would probably close on its own and not cause her any problems.

It wasn’t like that at all.

beautiful girl

Her seemingly innocent Muscular VSD, turned out to be a rather pesky Doubly Committed VSD, meaning it sat right underneath the aortic and pulmonary valves.  It needed to be repaired before causing damage to the tissues around the valves. 

On 23rd December 2015, Rainbow had open heart surgery to repair her VSD and it was a success.  Her heart is technically fixed.

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On 12th January 2016, we received a diagnosis which covers every anomaly we have noticed with Rainbow.  Our little girl has DiGeorge Syndrome.  It’s a chromosome abnormality, 22q11.2 deletion.  The future is unknown as those with DiGeorge experience it very differently. 

As Rainbow grows we will find out how she is affected by the syndrome.