Cleft Lip & Palate Diagnosis Delivery: Communication Matters (Cleft Lip & Palate Awareness Week)

022When my Frankie was diagnosed with a severe cleft lip and palate, this is what happened:

My unborn son Francesco “Frankie” Enrico Ventura was diagnosed with a unilateral cleft lip and palate at the Worcestershire Royal Hospital on Wednesday 25th September 2013 when I was 23 weeks pregnant.  The sonographer who conducted the scan blurted out that he could “see an abnormality” and that it was a “cleft lip”.  My husband and I were completely dumbstruck, we were so shocked at the way he said it that we literally couldn’t speak.  The sonographer went on to ask us if we knew what a cleft lip was, and before we could answer he said “it is like the children you see in pictures in the paper in third world countries where their lips don’t form properly and their teeth grow out in the wrong place.”

Reeling from being told this we were ushered into a room and left on our own for at least 20 minutes while a consultant was fetched.  I was in floods of tears and my husband was doing his best to comfort me, but we were both shocked and devastated at the news that our son would be born with a cleft lip.  All I could see in my head was images of the children he described and I couldn’t stop crying.

A consultant came in and said that she would arrange an urgent referral to Birmingham Women’s Hospital for a second opinion, gave us an poorly photocopied NHS leaflet about cleft lip and palate and we were then free to go.

We had no idea what we were dealing with, and what it meant for Frankie – my husband and I were scared out of our minds.  Even though the consultant said to us to try and refrain from searching for information about it on Google we are both very inquisitive people so once I had calmed down a little we got my laptop out and my husband typed “cleft lip and palate” into Google.  The first link that came up was to the Cleft Lip & Palate Association website.

To this day I look back and I still feel angry about how we were told that Frankie would have a severe cleft lip and palate. I can’t get the sonographer’s face out of my mind, the way he told us this news will be firmly in my mind forever.  He could have delivered the news in a much more sensitive way, or even fetched a consultant to do it, but instead the first thing he did was put images into my head of children with their lips malformed and teeth growing out in the wrong places. Communication is SO important when delivering bad news or a diagnosis>

With the help of Rev’d David Southall, my good friend and the Chaplain at the Worcestershire Royal Hospital, we met and talked to Rachel Carter, the Head of Maternity Inpatients, and she organised for the sonographer and other sonographers to have additional training to deliver this kind of news to parents to be.  We didn’t want him reprimanded, we wanted him to have additional training so that other parents to be didn’t go through the same thing we did if they were given a bad diagnosis of any kind.  Rachel very kindly wrote a lovely letter to us explaining the actions she had taken and what she had done training wise to rectify the situation.

So to anyone who works in healthcare reading this, please consider the way you give bad news to people of any kind.  They will have that image of them firmly entrenched in their minds forever if they are not told in a sensitive and easy to understand way.

This will form part of my new campaign “Communication Matters”, which will be launching later this year.

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