I don’t even really know how to start. Or even where to start – do I even want to write this down? By doing that am I making it more real? Will I have to ask questions I’m not ready to hear the answers for?
A 20 week scan. You can forget its actually called an Anomaly Scan – you just get excited about seeing your baby and how much they have grown and spend days (Ok the last 5 months) pondering over whether to find out the sex. Your last thought is on anything being found to be an anomaly.
An anomaly, its such a strange word isn’t it – what does it mean? Something abnormal, something different, something not expected, I guess the clue really is in the name. It’s crazy how well the scan was going, all the major organs were being ticked off like a shopping list.
Heart, liver, stomach, spine, femur, brain, nose, lips, kidneys, umbilical cord, placenta – we could see the legs and arms and we were grinning from ear to ear. That’s our Mini Lloyd.
Then the curveball. “Have you had a bleed recently?” No, I had a small bleed at 7 weeks why? This he said is the bowel, and see how it’s bright? We looked and yes, it looked bright, like the bones we could see. So?
“It shouldn’t be like that”
5 simple little words, yet as they sunk in the world stopped. They were echoing louder through my head IT SHOULDN’T BE LIKE THAT. I don’t know if words came out actually, I probably just looked at him, Daddy Lloyds grip on my hand becoming tighter. He said something about referring us, to a consultant. Yes that’s a good idea get someone in here to explain, why shouldn’t the bowel be bright? What does that mean? But no the consultant wasn’t in today, one of the midwives would speak to us. Go sit in the waiting room.
I think we got there. I think we sat in silence but the words that were screaming between us were deafening. My brain sending me back to my first ever paediatric job in Oxford. A specialist bowel and urinary paediatric surgery unit. Willing myself to remember something, to remember a antenatal diagnosis of a “bright” bowel. But nothing was coming to me.
My name was called again and off we went subdued and wanting answers – these never really came the midwife didn’t know what to say to us, she said she had never heard of it before but she was sure it would be nothing to worry about. Even in the mist of fog I had found myself in, I clearly found myself wanting to say to her “I’m sorry, if you have never heard of it, how on earth can you tell me not to worry?” It must be rare if a midwife has never heard of it. After asking her for the third time what it was they needed to rule out, she shamefully put her head down and said Cystic Fibrosis.
Next Wednesday was the earliest someone could see us to explain more, so go home, don’t look it up on the internet and don’t worry. Possibly the worst breaking of bad news ever.
When the tears arrived there was no stopping them, they were falling for a good minute or two before I even registered, the midwife left the room telling us to leave when we wanted. With the big, fat hot tears rolling down my cheeks, Daddy Lloyd and I walked out of the department. I tried to hold my head up high, tried not to sob but I could feel the stillness in the waiting room we crossed. Every couple sat with that awful thought of that could be us next.
Our report says “Hyperechogenic bowel – moderate” Without trying to scare ourselves we *think* it could mean one of the following four things
1) A marker for Downs Syndrome
2) A soft marker for Cystic Fibrosis
3) An infection – potentially CMV, Toxoplasmosis, Rubella, or herpes simplex virus
4) It might mean nothing at all
I am a control freak and I hate the way the NHS left us with no support, explanation or guidance. We have ourselves paid for a blood test to test for the infections – if it is one of those then treatment needs to be started immediately from what we understand. I am lucky that I work with the Portland Hospital so I asked if there was someone who we could talk to. They were brilliant and we got a lot more information from a foetal consultant. It’s such a shame we had to pay for such support and guidance and I know how lucky I am that we could
afford too find the money to do so. The bloods will be back on Tuesday so potentially we are ahead in the diagnosis.
In the cold light of today, yesterday seems an eternity ago already. Was that really us? Are we really in this situation? I’m focusing on the fact that everything else was great with Mini Lloyd, we appear to have a beautifully growing small person – surely this “bright bowel” cannot be that bad? I am most scared of it being an infection but I haven’t been ill myself, surely I would be? I have not looked into the treatment for if Mini Lloyd does have an infection, I’m not sure I can right now.
Right now I just want to know me and Mini Lloyd are alright.