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.
What a difficult post for you to write. I really hope that all results come back clear and they confirm that it is really nothing to worry about. I have everything crossed for you and Mini Lloyd. x
Thank you so much, I really appreciate your lovely comment! X
Oh Louise, that sounds so difficult and what an awful awful position the NHS has left you in. I hope you get some answers very soon. Much love xxx
Thank you Emma, trying to be very positive today and get through the next few days x
love and cuddles xx
Thank you Sam xxxx
Oh wow, I don’t know what to say either. But I felt like I wanted to say something, to show you that I’m thinking of you, and I hope what I say is the right thing. Thank you for sharing, it’s very brave of you, I’m not sure I would be that brave. I wish I could help give you more info, but all I know is what I’ve just googled. It’s so awful that you weren’t told any info at the scan and had to go away and find out yourself and are having to wait so long for more tests. I really hope you get the answers you need asap, and that you are both completely healthy. Lots of love from us xxx
Thank you Ruth, I really wasn’t sure whether to write or not, but I wanted to get things out of my head and on to paper to help me really. Plus so many friends and family are asking how our scan went and it has been hard to put into words, I really appreciate your lovely words x
OMG!! Mini Lloyd!! I see does not want to be out done by Olive and her journey!! Maybe baby realised how ACE you were and how I still NEEDED to repay the favour!!
I know where you are now my lovely your brain is in overdrive. This was my 1 year update after the birth of Olive Anne LOUISE Giltrow hope it makes you feel inspired
You were there after my scans and know what we went through xxx
http://www.charliemoos.co.uk/blog/read_55323/stronger-.html
I’m so thankful through my 20 weeks even though it was stressful and scans so often that I had a super friend to chat too xxx If you need me you know where I am
xxxx
You! The tears have restarted! Thank you, and I can tell you honestly Olive’s name came up loads yesterday as Kev and I talked and talked. Olive will remain my inspiration she is a true little fighter and I hope against hope Mini Lloyd is the same xxxxx
So proud of you for writing this post. I hope it has helped to calm the chaos going round in your head. Love you xxx
Thank you lovely, yes it has helped to get it out of my head – I just keep going round in circles so it’s helped to have it all down – love you too xxxxx
What a frustrating and scary situation! We love you, Lloyds, and are sending all our best your way!! On the bright side, that is one very long list of Mini Lloyd features that are growing splendidly. I’m praying for more good news for you next week! xoxoxoxo
Aww thanks Carolyn! Today we are concentrating on all those organs that are growing as they should be! Xxx
Oh my goodness what an utterly stressful time and I am shocked by how the NHS dealt with it. It must have been so difficult to write down. I will think endless positive thoughts for you all and hope so much for good news next week. Clare x
Thank you Clare. It has really started to sink in the last couple of days how bad the care was, the MW just left us and told us to go! She could clearly see how upset we were! Thank you for your lovely comment! X
Focus on the positive, so much was right with the scan. Sending positive thoughts xxx
Thank you! That is our aim now to focus on all the positive parts XX
Oh Louise, I’m so sorry to hear you’ve been through this. I know it’s hard but try your best to focus on positive. I’m sure everything will be okay. Big hugs to you xx
I really feel for you. I had a similar-ish experience when I was pregnant with my first. At my 20- week-scan I was told that my unborn baby had talipes (clubfoot) and was referred to a consultant. We were sent away with no information and so I ended up googling the condition and scaring myself silly. When we saw the consultant he confirmed that our baby had talipes in both feet and this meant there could be a risk of a chromosomal abnormality like Down’s syndrome. I had to have an amniocentesis to find out and in the meantime my husband and I had to have a heartbreaking conversation about whether or not we’d be able to cope with a disabled child. Thankfully, the tests all came back fine and our daughter is bright, happy and healthy. Even her talipes was mild in the end and her treatment is going really well. I guess what I’m trying to say is that it’s easy to scare yourself but try not to worry, things may not be as bad as you think they might be
Thank you for sharing Laura, it’s really great to hear when the news is not what you are expecting that in reality when the little one comes along they are healthy and bright and happy! I’m pleased that your little girls treatment is going really well too
thank you for the reassurance x
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Everything crossed for you… xx
I read this word for word hoping for a happy ending, I hope that will still come. So very hard when things aren’t “normal”. Thoughts with you x
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Hugs to you Louise. I have been in this situation twice before (with two very different outcomes) where abnormalities have been found at the 20 week scan, so I know the multitude of emotions you are going through. I will not go into too much detail here, but often these things really are nothing, resolve themselves or are easily treatable.
I wanted to comment and let you know I am thinking of you. This is a difficult time but I pray everything turns out well for you and mini Lloyd. X
What an awful situation. I thought the NHS were meant to re-see you within 48 hours if they found an abnormality. I can understand how you felt let down, hopefully you will get the answers sooner by going through the Portland. I’m sure that time seems to be going so slowly now..try to stay positive, and good luck for this week. I’ll be thinking of you and mini Lloyd. x
Hello lovely, what a brave post. I’ve said what I wanted to say to you personally, but sending over another barrel-load of ((hugs)) anyway. Got everything crossed for you all xxx
Thank you “Bod” – it honestly means so much to me thank you
X
What a horrible situation. Luckily there is nothing on that list that cannot be dealt with and there is a wonderfully loved little baby in there. I hope you have some answers soon so you can work out what is next and I hope the answers are the right ones x
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