Wednesday, 30 January 2013

Through the Keyhole: Hope Fades

It's been a long and painful two weeks since we first found out about the problems with our little bean. I have been trying to write it down for the last few days and it's hard. Hard because it's now all a blur. Hard because we are coming to terms with our loss; grieving and starting the process of moving on. However I find it cathartic to write about it and I hope that in some way writing this down will not only help me deal with what's happened but also other people who may be going through the same thing. I certainly found some solace in the writing and experience of the wonderfully supportive and caring Corinne of the fantastic blog Motherhood Journeys. There's too much for one post so what follows are three separate posts following our journey on three particularly difficult days.

Hope Fades
Wednesday 23rd January 2013

Sitting in a waiting room full of happy, expectant people. The hubbub of excited chatter and intimate whispers. Couples waiting; hand in hand, hand on belly, head on shoulder, arms intertwined. Of course some of them might be like us, waiting nervously, a nugget of fear lodged in the pit of their stomach, but if they are I can't see them, I am too preoccupied by my own fear.

My fingers drum a rhythmic pattern on the arm of my chair and my stomach clenches tightly. I glance at the clock. 

Tick tock.

That was on Wednesday. We went back to the hospital for our third scan, the one that would tell us whether our 14 week pregnancy had a future, whether the baby inside me had any chance to grow and thrive into a kicking, giggling little being on the outside.

Earlier in the day we had a telephone call from the lovely Midwife we had seen the previous week during our consultation with the Fetal Medical Consultant. She was able to give us the initial results of the CVS test. Alongside our first trimester blood and nuchal scan results they showed that there was no chromosomal abnormalities with the baby and that we were very low risk for Downs Syndrome. Of course the full results are yet to come back, it takes up to three weeks, but it is likely that they too will show no chromosomal abnormalities. So before we went in we knew that if the bladder of our baby was still enlarged then it was likely to be a structural development problem. Which in some ways made it all that much harder... we knew that decisions would have to be made. Before going into that room we were still clinging on to that tiny glimmer of hope that the bladder had drained and we would be seeing a normal healthy baby on the screen.

As I did at the last scan I ask for the screen to remain off, it would break my heart to see the baby with that huge black hole again. As I lay back on the bed the Consultant gently squeezed my leg as if to say "it's okay, I understand what you are going through, I know this is hard." It was a small but significantly caring and important gesture. It may have been only a moment of human warmth and contact from a stranger, but the tiniest things mean so much in these fraught and emotional situations.

Silence. One hand rests on my eyes to block out the room, the other is curled up in Mr B's hand. 

Another clock. Tick tock. The cold gel and the hard, smooth probe pressing into my stomach.

A gentle voice says "the bladder is massive."

The words weren't a surprise. I didn't react, I felt dumb, numb. Then we sat in the bright light of the room talking about what to do. In just 10 days the bladder had gone from 15mm to 32mm and was starting to form a keyhole shape. As yet everything else seemed to be functioning normally but the very soon the kidneys, lungs and heart would all sustain damage from the pressure of the grossly enlarged bladder and the flow back of urine into the baby. My amniotic fluid would decrease slowly but surely. The Consultant was very calmly and sympathetically took us through our options:

Just wait and see, come back for your 18-20 week scan and see what course nature takes.

Drain the bladder and come back in a few days to see whether that has solved the problem. Then follow if needed with vesicoamniotic shunt for our baby to keep the bladder from filling and to keep the amniotic fluid from reducing. 

End the pregnancy now.

Sitting here looking at those options in writing it's easy to think well let's go with the first one. There's always hope right? Maybe there is but what hope? Even if there is the tiniest hope what greater things are you sacrificing for that tiniest slither? After giving us these options the Consultant went on to explain the scan; the bladder shape and rate of increase in size - the baby had severe fetal megacystis. 

We asked a lot of questions about each option. A lot of questions. It started to become clear what he thought, but at no point did he push us to make a decision in any direction, I always felt like this was our decision and ours alone. He told us that from the scan it was probable that the urethra of the baby was blocked by a valve not developing and draining the bladder would only lead to a temporary fix. Sometimes draining works if the valve is a bit weak and it just needs a nudge to get it functioning properly, but in those cases the bladder doesn't fill up as fast as early in the pregnancy or become as huge as that in our baby. Draining the bladder would be highly invasive to both me and the baby, it also carried a risk of miscarriage and in all likelihood would need to be followed by a shunt. He said that taking into account the size of the bladder we would probably be in the same situation in a couple of weeks but with a more developed baby, a baby that would be by then showing significant signs of other problems caused by the build up of urine in the bladder; pressure on the heart, lungs and kidneys.  

We decided there and then that we had to let go of this baby. It was clear that even if it did survive, there was no chance it would be without very severe complications. I am sure there are people who will read our story and wonder why we didn't just keep going and see what happened. But the thought of having to go through this at 20 weeks plus is untenable, or to have a baby with very serious complications who probably will be born very premature and wouldn't survive past the first few weeks or be on dialysis or need a heart or kidney transplant in the first year doesn't bear thinking about. Who would we doing it for, us or the baby? 

And then there's Leelah to think of, darling beautiful Leelah who is so young and needs her mama and papa. We have a healthy and vivacious one year girl old who fills us with joy and we had to think about her as well. The last two weeks had been hard, we were exhausted from all the waiting. It all seemed so emotionless at the time, neither of us cried, we seemed calm. I remember thinking "I should be bawling my eyes out, what's wrong with me?" Looking back now I realise we were just in shock, numb not emotionless. Just lost.

The Consultant was incredibly reassuring and told us that we were just very unlucky and that they only see this purely structural problem with the urinary system two or three times a year (as opposed to issues associated with chromosomal issues such as Down's, Edward's and Patau's Syndromes). The we were back in the little room again.

Tick tock

Door opens. Laughing, smiling couple walk by clutching their scan pictures, cooing over their perfect baby. Thoughts dance unbidden through my mind. "Why us not them?"  

Forms to sign. Termination. Such a final word.

Tick tock.

This time we left wordlessly through the back door. The next day I would return to take the pill that would stop the pregnancy.


  1. I was so anxious about reading this, but you have written so beautifully and honestly about your experience that you've helped me in return. Thank you. You have made the best decision for your baby, I completely understand that desire to hold on to that hope and that baby no matter what, but in the end you have selflessly put their needs before your own and it's a very brave thing to do. I'm glad my blog helped and I'm sure you sharing your experience will help others too.

  2. Dear Corinne, I can't tell you how thankful I am for your support. Just being able to ask someone questions and know that nothing I asked was stupid or silly was a relief. Writing with so much emotion but also trying to convey the pragmatic elements of what happened is hard but helpful to me and others I hope. Thanks again for your love and kindness S x

  3. How brave you are to share your story. I can't pretend to know how you are feeling but I would have made the same decision as you if that helps at all. And even though we have never met you have my support and love. How lucky Leelah is so have you both as parents. xxx

  4. Mrs b. I just ran across your blog, as I was searching for answers. We're going through the same thing right now. Your blog seems to be the most timely.

    At our 13 week nt scan they found an enlarged bladder too. I don't think the doctor had seen many o of them because she nonchalantly told us it was no big deal, that worse case, the baby's bladder would need to be drained at birth. I knew in my heart that wasn't true. She booked us an appointment for a perinatologist at Stanford, who was very loving and explained things in detail. She referred us to ucsf fetal treatment center, for them to review our charts, but I'm still scared that there might already be irreversible kidney damage,as the word "echogenic kidneys" ring in my head.

    To top it off we found at the baby is a boy, which in hearing this news, is supposed to be a joyous day! My daughter was planning a fun gender reveal party for us and everything, yet it's overshadowed by this dire news. I go from being optimistic to down right sure that there's no hope for our little guy.

    I'm still not sure what we are going to do yet, we have one more scan on Wednesday then I suppose we will have to make a heart wrenching decision.

    Thank you for writing your story and I'm so sorry it didn't end well. I know we're likely facing the same decision and it helps to know we're not alone.

    1. Dear Shawna, I am sorry that you are going through this as well. It is now a few weeks on and we have had time to let it all sink in. It was really sad but we know it was the right decision for us, for many reasons. I am just very grateful for what I do have and all the love that surrounds us. That little baby just wasn't destined for this life and there would have been no point hanging on to it. I don't know how large the bladder of your baby is and maybe you will be lucky and the bladder will drain before your next scan. I do hope so but if not please feel free to contact me if you have any questions or want any support.