Thursday, 3 September 2015

Second trimester scan + Second wedding anniversary = Start of a very sad journey

The other day James and I were driving home from somewhere (I can’t even remember where, because everything is such a blur lately), but he said to me “everything just went so fast…we had him one minute and we were so happy and now we have nothing”. This perfectly sums up the last four weeks for us.

It was Friday, August 7th, 2015 and despite me having a cold and feeling like crap, we were so excited for our 20 week scan. It was the day before our 2nd wedding anniversary – what a perfect way to start our celebratory weekend off by seeing our little, precious baby on a screen and finding out the sex! We had already planned to go shopping straight after the scan to buy some gender-specific clothing. I honestly thought I was having a girl, but James was adamant it was a boy. We had decided that we were not going to tell anyone the sex until our gorgeous baby was born (I definitely thought I was going to struggle with this!). When you book in a scan, and you’ve never been pregnant before (or perhaps had a complication), you sort of forget the scan’s purpose is to check everything is developing ok and not just to confirm the sex for you and give you photos.

(I just thought I would add in that both our Mums’ had dreamt that we were having a boy, however another relative did a Chinese calculation and was sure it was a girl...My mum had also had a dream that our boy had dwarfism…which is just weird given what happened next).

So off we went for our scan - I was 18w6d pregnant and we were certain we would be there for hours as our 12 week scan (which all came back healthy and normal) took 2 hours because our cheeky boy wouldn’t get in a viable position. I still think about how naive we were sitting in the waiting room that day.

We thought the scan was going well. The sonographer walked us through all the different body parts of our little guy and showed us where his genitalia was, I remember him saying to us “..and there is the sex”, “a boy!?” I asked with a huge smile, he didn’t really reply just nodded. Even though I had wanted a girl and thought I was having one, suddenly a boy felt perfect. We already had our names selected and straight away referred to him as ‘Little Sebastian’.

When I look back at the ultrasound now, it really did go longer than you’d expect and I don’t know why I didn’t pick up on the sonographer measuring some body parts twice and talking less to us. At the end of the scan I had asked whether he required to do an internal ultrasound as the midwife had requested my cervix length. Whilst he replied that everything related to my cervix was fine and visible on the scan, what he said next changed our lives forever… “at the moment we are really concerned about [your] baby’s limbs, they are a lot smaller than they should be..  I have called the hospital already and they are expecting you there within the next hour, you will need to go straight there now”. Our faces stunned and with me fighting back tears, he left the room to collect prints of our scans to take with us to the hospital. During the ultrasound he had asked me to empty my bladder, this is when he must have called the hospital – we felt angry that he called them before telling us. This was our son and he was telling some stranger about him before us!


We didn’t talk to each other on the way to the hospital, what could we really say? When we arrived I explained to the receptionist that we had been sent straight from our morphology scan to the hospital, I said my name and she quickly responded “oh, Lauren yes…” we waited what felt like a lifetime before a doctor saw us (on reflection it was really only about 2-5 minutes, maximum).

The doctor was very polite and friendly, she collected our family history and explained to us what short limbs meant. She spoke with a doctor in another room to confirm information as it came through from the ultrasound technician. We were explained that our baby’s limbs were very, very short and were asked if skeletal dysplasia was in our family or whether James and I were related… obviously the answer to both these questions was no. But we started to get the idea that our baby had Dwarfism. Whilst this made us a little sad, we were OK with that (I work in the disability field and felt like we could still provide him with a good, quality life). However the doctor then said, in what felt like a passing comment, “sometimes, and it’s very rare, but sometimes, when limbs are this short it can be lethal”. I burst into tears. WHAT!? How can my baby’s limbs cause death? I am pretty short and I have my own bone deformities, so I just assumed the baby would be like me. Having a still born was never on my radar!

She organised an appointment to attend another hospital first thing on Monday morning and told us that the other hospital had access to tertiary resources and would be able to assess everything better.

That was it.

Our appointment was over.

When we got home we were in shock. I read the report from the sonographer and noticed additional ‘problems’ that the doctor hadn’t mentioned to us, such as poor ossification of the skull and facial bones (I’ve put a snippet of the report below for you to see). Suddenly things were more serious than we could imagine and we were left for the whole weekend to wonder how rare lethal skeletal dysplasia was and whether our baby was going to be OK. That was the longest weekend of our life. I think I googled every medical term on the report and searched for some answers or people who had similar stories. Unfortunately there are so many different types of skeletal dysplasia (over 200 apparently), so finding someone to relate to was difficult and did not happen, especially as our baby’s limbs were less than 2nd percentile.

 What we planned to be a perfect start to an anniversary weekend, we found ourselves doing mundane chores, crying and talking about the ‘what if’ scenarios. It was really hard to celebrate that we were having a boy – finding out the gender seemed to have dissolved into the background of all this new information. We did eventually buy some boy clothes for Sebastian that weekend as an attempt to put positive energy into the universe, but we really didn’t know whether he would ever wear them… happy anniversary to us 
This is the scan of Sebastian's head. I love this photo because he looks like he was reassuring us with a big smile (a smile he had when I delivered him)
the photo below is what I posted on Facebook, no one really knew the true meaning to that message or what we were going through. 

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