Stand your ground

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Never be afraid to seek a second opinion on your child’s health

When our daughter, Ella, was born in 2006, we were initially told that she had Down’s syndrome, owing to her single palmer creases, but we quickly realised that the hospital and specialists didn’t know a great deal more than we did. So, we waited for the results of genetic testing, which told us she had a chromosome disorder and the rare eye condition aniridia. It was such a frightening time for us; what was meant to be a joyous occasion had become a journey into the terrifying unknown.

After seeing the consultant ophthalmologist, who suggested she may need an operation for a cataract in her left eye, we decided to get a second opinion. So, we took Ella to an ophthalmology consultant at Great Ormond Street Hospital (GOSH), who determined that surgery was not necessary as yet.

Ella also had breathing problems for her first eighteen months of life and our local consultants were talking about a possible tracheotomy. However, my husband and I decided that this was the last option for Ella, as removing her voice when she already had sight and possible hearing issues would leave her in a silent world. We again sought a second opinion at GOSH, where the ear, nose and throat (ENT) specialist recommended taking out Ella’s adenoids.

As part of this procedure, they used a nasal pharyngeal airway (NPA) post ENT surgery to aid Ella’s breathing. This worked very well and following Ella’s success with NPA, our consultants in Newcastle have since used this technique to avoid tracheotomies for other children.

When Ella was two years old, she did something we never thought we would see; she stood up and walked. Unfortunately, though, our happiness was short lived as a month later, during a routine scan of her kidneys, they spotted bilateral lumps. While we knew cancer was a possibility from day one, we thought she had bypassed that particular horror. Although we knew what would happen, nothing can prepare you for your child having chemotherapy and major surgery.

2009 was a very hard year for all of us, but Ella’s strength of character and resolve shone through, and shortly after her third birthday she had a clear CT scan. Ella coped with more in the first three years of her life than most of us confront in an entire lifetime. She did so with determination, good humour and the energy of an Olympic athlete, and we have learned so much as people from our daughter and have grown immeasurably due to her being in our life.

Today, she is such a happy little girl. We know that her sight could be lost or could seriously deteriorate because of her aniridia, but she is developing and catching up nicely and has an insatiable appetite for life which touches all who meet her.

One thing we have learned over the past three years is that, as parents, you instinctively know when there is a problem with your child and, if you feel something is not right, you should go ahead and question even the most respected consultant. We are where we are today because we decided to question decisions made about Ella’s health and wellbeing. We sought second opinions which resulted in better options and treatment for Ella and each day we became more confident about fighting for our daughter’s needs and happiness.

As a parent, you have the right to receive the best care and help for your child, so never be afraid to stand your ground or demand changes that you think will benefit them. Trust your instincts; you know your child better than anyone else.

This article was first published in issue 48 (September/October 2010) of SEN Magazine.

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