Communication Matters!

Frankie’s Legacy undertakes a wide range of campaigning work to raise awareness of early pregnancy loss, stillbirth, neonatal death, cleft lip/palate, rare chromosome disorders and hyper fertility

In addition I will be launching a campaign in the coming months called “Communications Matters” which will promote the importance of excellent communication between healthcare professionals and parents to be, especially when bad news has to be given.  This is an area that is woefully lacking within the NHS, and the following are some actual examples of where the communication I had during and after my pregnancy was shockingly inadequate:

I was asked to have a scan in addition to my 20 week one as apparently the female sonographer couldn’t get a good look at Frankie’s hands and face, so when I was 23 weeks pregnant I returned to the Worcestershire Royal Hospital for this extra scan. This time it was a male sonographer, and naturally my husband and I were really excited to see Frankie on the screen again. Everything started off fine, we were beaming away when we saw him on the screen and then the sonographer said out of the blue and very matter of factly, “I can see an abnormality”. We both froze, then the sonographer said, “Oh there it is, I see it. It’s a cleft. And it is a very severe cleft too.” He then went on to say, “Do you know what a cleft is?” but at this point we were dumbstruck and he continued, “It is like the pictures you see of children in the papers in third world countries who’s lips are deformed and their teeth grow in the wrong places.” Of course I had seen these pictures and I was hysterical, I knew what a cleft was but I didn’t know anything about it. I googled it when I got home, and I wish I hadn’t, although I did find the Cleft Lip And Palate Association who were brilliant.

The following week at Birmingham Women’s Hospital after a scan to confirm the diagnosis of cleft lip and palate the female consultant we saw very matter of factly said, “I can arrange a termination for you as he has as cleft lip and palate” and went on to explain the most graphic detail the procedure for foeticide (as that’s what it would have been at that stage of my pregnancy), and I was absolutely gob-smacked to find out that you can have a termination at any stage of pregnancy for a cleft lip and palate! Of course, there was NO WAY ON EARTH that was going to happen, I was devastated that anyone would even consider that just because their baby wasn’t “perfect” by today’s standards.

When I found out that Frankie would be born sleeping I have to say the communication there was brilliant. I was also well looked after during my induction and his birth, with everything communicated to us in an easy to understand way. The only thing I would say is the timing of us being given a memory box – by its name and definition it is a box to make memories, but we were given it just as we were leaving the hospital the day after Frankie was born, so it was a bit beside the point by then – we had already made all the memories we could.

The day after I left hospital I was visited by my community midwife who clearly had no clue and no idea how to handle the situation. She was ill at ease and very awkward with me, and I had my brown post natal notes in my hand. She literally grabbed them from me saying, “I’ll take those”, stuffed them in her briefcase and left. I would have loved to have had a copy of them, but it is too late now, and I was too upset and traumatised to speak back.

Then when the test results from Frankie came in and we were called urgently to see a geneticist because they revealed that Frankie had Chromosome 15 Duplication Syndrome we were bamboozled with science and long, overly complicated words that we didn’t understand. We were also made to feel like we were at school again and treated as if we knew nothing and wouldn’t understand the significance of Frankie’s diagnosis. I did genetics as part of my human biology GCSE and I understood what it would have meant for him had he lived – he would have been incompatible with life and wouldn’t have lived very long.

I want these actual examples to be a thing of the past.  I want ALL parents to be and parents to be communicated to in an easy to understand way that doesn’t bamboozle them with science and so they are fully aware of the implications of what is being explained to them, often at times of great sadness and distress.

More information on this campaign will be coming soon.