https://news.sky.com/story/mum-of-baby-vanellope-born-with-heart-on-outside-ive-been-on-rollercoaster-11168888
The above link will take you to a news article from today where a baby has been born with her heart outside of her body and survived. This is fantastic news!!! a big well done to the teams involved in this and all the best wishes for the future of this little girl and her family. Miracles do happen.
I have written before about the stress and anxiety of expecting a baby, its a really worrying time for all involved and finding out at the 9 week scan means there's months and months or worry ahead before you can even see and hold the baby, then years of worry ahead. those who know me or have read my blog will be aware I have not experienced some of the worst case scenarios but I do try to empathise, and that's what I am trying to do here so please indulge me for the next paragraph as its all about me then I'll talk about others.
It was 2003 when my wife and I went for a scan at Good hope hospital, during this scan the mood changed a little as the scenographer spotted something. With the scan finished we met a consultant and had a very quick and blunt discussion about what was found, talk about worst case scenario, the scan had should some cysts on the baby's brain which can be associated with a number of syndromes including ultimately baby loss, of course the last part was the bit that we picked up on. every 2 weeks we were at Good Hope hospital for scans as our babies brain developed these cysts dissolved as part of normal development (I'm not a medic). The fear and stress at the time was horrendous but fortunately for us the baby was born healthy and well. So in trying to apply my experience in understanding the position of the family of the baby in the news all I can say is its incomprehensible and well done to them.
As time goes by we often lose contact with friends and relatives but every now an then paths will cross and it was only in the last 2 years that I was back in touch with someone who I had not spoken to for decades. I am only raising this because I'd like to use the above news story to raise a little awareness. This person has grown up (as we all have) and started a family, one of their children was also born with a heart problem, I understand part of the heart didn't develop and so its only partly working. I am not aware of all the details so please forgive my ignorance. Again I will say the stress and fears involved in this must be horrific and I admire their emotional resolve. Stories like this in the news and effecting people you know really brings it home and puts perspective on some of the issue we worry about daily. I'd never considered heart development in any of my children's development or any other part of my life before this, its just something that we all lock away and hope doesn't effect us.
So what can we do? Praise the teams who are making a difference and support them, families and charities who are involved in or affected by with this type of issue on a daily basis. one of which is www.chuf.org.uk who have raised tens of millions of pounds to support families and children affected by heart development issues.
The big thing is talking about these things and being aware. They a problem shared is a problem halved, emotionally it maybe or a conversation may just open a door to someone that they didn't know existed. I suppose what I'm saying is whilst this is a special case as the baby girl is the first in the UK to survive there are many others effected by embryonic development issues and we don't know or discuss them.
Once again Well done to the team involved in the case above and well done to the families staying strong facing life's challenges.
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