My baby had megacystis - I was 13 weeks pregnant

By anonymous on 27/08/2011

I was 16 years old when I found out I was pregnant, excitedly, maybe naive, I went to my dating scan to be told that there was a problem, and I was being referred to a 'better' hospital with a fetal medicine unit.

Here, I was told my baby had 'megacystis' - I was 13w6d pregnant.

Megacystis, I was told, is a condition where the baby cannot pass urine out - so it drinks the fluid around it, and its bladder then inflates as it becomes full. I was told I could drive the hour every week to have the bladder drained until 18 weeks, and then at 18 weeks, they would try and fit a 'stent' into my baby's bladder, so urine could pass out through it.

I was scared, scared of it not working, and scared of the pain - those needles they had to jab through my stomach and push through my womb were incredibly long.

As the surgeon proceeded with the first round of treatment, he said 'it will all be worth it when he is here' - he? I was told the likelihood of the baby being a girl was low, as this condition usually only affects boys... My little boy, I'd call him Michael, I said to my mum on the way home.

On week 17 of my pregnancy, I yet again returned to see the consultants and surgeon, as they drained the fluid from my baby's bladder, I noticed how little fluid there was around him 'don't you think you should put some fluid back in around him?' 'he will be fine until next week' I was told..

I went home in pain, and needing some rest, next week was looming and as much as I was excited, I knew this wasn't going to be sunshine and rainbows.

The day arrived and I was so nervous I felt sick, I was bracing myself for the worthwhile pain I was about to go through, but so excited to know we were heading in the right direction. We arrived at the hospital, they laid me down on the bed, put the ultrasound to my stomach with the warm jel, and silence.

My heart was pounding, I looked from consultants to sonographers faces, to my parents faces and to the screen. There was no fluid left around my baby, he wiggled his hand as if he was waving, but the fluid he was supposed to be practising to breathe in, was inside his bladder, in fact, his bladder was so big, it was bigger than his head.

I heard muffly conversation over my thumping heartrate, 'echogenic kidneys' 'brain damage' 'nothing more we can do' 'Nothing more you can do?' I screamed, 'NOTHING MORE YOU CAN DO?' 'Put some fluid back in there!' 'Help my baby, please, god, help my baby'.

I was led into the consultants office and sat down I was a scared, tired and heartbroken little girl, I looked at him through the tears in my eyes 'what am I supposed to do now?'. He looked at my parents and asked them to leave for a moment, once they had, he looked at me and said 'If you keep this little boy now, he may be born with brain damage, kidney failure, renal disease and various other issues'. 'If you go ahead with this pregnancy, one of two things will happen, you will either lose this baby naturally, or you will carry on a bit longer, he will be born, and he probably won't see his second day of life'.

My world crumbled when I realised they really couldn't do anything, I really had no choice left. I was told I would need to take a pill to shut down my hormones, and essentially kill my son, and then a couple of days later, would be admitted to hospital to induce labour.

September 9th 2007, after 8 hours of agony, my son was born sleeping and he was beautiful, he was baptised and was wrapped in an angel gown, I held him and I stared at his tiny hands for hours.

I had to sign consent forms for them to carry out a postmortom, to establish whether this was congenital and was likely to happen again, his funeral wasn't until October 2007, and as I stared at the little white coffin in front of me, something faded inside of me. Hope.

It wasn't until February the next year, I was called back to discuss the results, the baby had an extra little finger on each hand part of his left lung was missing, his urethra and anus were both blocked he had low set ears. I could accept all of those abnormalities, I could accept it all, except for the last part - Michael James, was in fact, a little girl. I had to grieve for a daughter I'd never get to paint nails with, and a son I never even had. And still to this day, 4 years from then - it kills me inside.

Editor's comment

That's heart-breaking. To have gone through those weeks of draining the bladder, to then be told that your baby could not survive, must have been devastating. I am not surprised you are still grieving for the little girl you lost, and as you said the baby boy you thought you were carrying. You must feel you have poured out so much pain and sadness. Please find a centre for baby loss support in your area.

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