When we were in hospital in 2013 we were fortunate enough to meet a paediatric surgeon from Egypt. She was on 6 week placement in New Zealand and we had the good fortune of Mrs Said standing in for our head surgeon whom had gone on a well deserved leave. I doubt he was on holiday though. I daresay he was giving lectures and working as he often does worldwide.
Since we had our first gastrostomy peg placement 5 years previously, we always suffered from a leaking peg and Brennagh would often have burns on her stomach.
These acidic burns were likened to chemical burns but we were only able to treat with zinc cream and bandages. This problem had always been linked to low toned children which Bren was classified as due to her trisomy 18. So I was told.
I could never really get my head around the 'low tone' as Brennagh is a very active child. Walking, running, crawling etc.
After years of putting up with it we arrived at Wellington Children's Hospital after Brennagh suffered the catastrophic loss of 3/4s of her bowel.
New opinions regarding her condition and the brainstorming sessions with the surgical team to problem solve were welcomed. For a long period of time and suffering on Brennagh's part we were unsuccessful at finding a resolution for the leaking and burning.
That was until Mrs Said came along. She had an innovative idea that she had tried with success once before. She used surgical laceration glue call dermabond. At $30 a tiny vile, it wasn't something we had at our disposal on the ward.
It was only available in the Accident and Emergency department and in the operating theatres.
We usually applied two viles, once a day. In a very short time time the skin was able to repair itself under the protective coating of glue.
Once it was realised the leaking couldn't be contained the gastrostomy was reversed leaving us with a naso gastric line for feeding.
In very poor countries where they don't have access to medical supplies egg white/albumen has been used in the home environment to cover and protect burns. Whilst not recommended by our medical profession when your resources are limited, you are forced to use what you have on hand.
We are very fortunate in New Zealand that our surgeons are not afraid to try new things, listen to others and admit when they don't have answers. In our case I have been lucky that our team members don't give up easy.
In that respect I could never thank them enough for saving my daughter when the odds were always against us. She has proven time and again that miracles do happen.
Kathleen McKay ~ Author.
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