Today was World Dwarfism Awareness Day and October is Dwarfism Awareness month, so I have written a little impromptu blog post. It’s stream of consciousness and a personal one so it may get lengthy – you want to make a cup of tea first!
Some of you may know that my son has a form of dwarfism called achondroplasia, this is the most common type and is not very common at all, only one in 15,000 – 40,000.
When I was pregnant I had a low lying placenta so I had an extra scan at 34 weeks. This picked up an anomaly with my baby’s size. I have to say that the sonographer was not very professional at all – first she said I had a huge baby then she said I had a small baby. She looked confused and called in a midwife. To say my partner and I were worried was an understatement as she was obviously very concerned but she didn’t want to tell us anything. We were taken into another room and left there and I heard some midwives whispering in earshot – I heard the word dwarf but I was in shock so didn’t actually process what was going on. A midwife came in to say we needed another scan at a different hospital with better equipment as they wanted to check the baby’s size. I didn’t find the staff caring at all, she asked me if I spoke English and if I understood what she had said. I just said I was in shock, what did she expect me to say?
The two weeks in between this scan and the next were agony (fear of the unknown). Our whole family, not really knowing anything other than something might be wrong, were worried out of our minds, my partner and I argued about nothing. Then not long before the scan I consciously connected with my bump and I felt a shift, I knew that it would be ok. I got a big yes from my body that it is ok, my baby is ok; I love my baby who is just as he should be (I did not know he was a boy but at this time I had a knowing about it and my partner and I even named him).
You may be shocked to hear that although I had the scan and was told that my child’s legs were shorter than expected, the consultant said it was either my placenta failing, I had a virus, or it was genetic, but she couldn’t say which at this stage. Looking back I think if she had actually thought it was the first two she would have suggested an induction but she said I was due soon so it was best to wait. I do wonder why the silence? If this woman had been honest maybe there would have been more support early on. Did she think it was helpful to be kept in the dark?
My baby was born and we kind of forgot about all of this. My sister asked the midwife doing the first checks about the length of his legs and she said he looked fine. I asked my doctor at the six week check, he said the same. At 2.5 years (and when I was 20 weeks pregnant with my second) it was a health visitor who told me. She actually didn’t say much, she was kind and understanding and she spoke as if I knew and she was filling in the blanks, which is true. I cried because she verbalised a lot of my worries and I took the day off work the next day because I found the news more difficult than I expected. I was never upset about who my child is, what was going through my mind was the state of the world we live in and whether other people will see my child as I do, which is for who he is and his personality.
We didn’t actually get a formal diagnosis until very late (age 4 guys – after that anecdote our NHS has a lot of failings in this area). It was like at every step nobody wanted to be the person to say that yes your child is different. Maybe nobody really looked properly at the notes (or at my child!), maybe they weren’t listening and had their own agenda. This lack of knowledge almost caused me to stop breastfeeding in the early days as my baby had not put on the weight expected and I was pressured by a midwife to use top-ups of formula. This suggestion didn’t feel right for us, he looked healthy and had lots of wet and dirty nappies so I carried on. Later, in the two years between my talk with the health visitor and the official diagnosis, there was a lot of – well yes it does look like it, but we can’t tell you for sure even though you already know (!)
The truth is that I have a very healthy and bubbly little boy who wins people over with his big heart every time. I think that I knew the truth that day when I connected with my bump and told my baby that I loved him no matter what. I never verbalised it because I didn’t have the words or the knowledge that I have today. And it really is more than okay so I can celebrate today and share this with you.
PS: There is a fab video from Little People UK for Dwarfism Awareness month here.