This is a guest post submission about a baby that had the diagnosis of cloacal extrophy. His parents made the agonizing choice to terminate the pregnancy and spare their baby a life of pain.
At our 12 week scan, the sonographer thought there may be something wrong, possibly an omphecele.
We were scanned again at 14 weeks by the fetal medicine consultant, who believed that the issue was more than an omphecele (parts of the stomach not inside the body), but also the bladder (bladder extrophy). So we were sent for another scan at 16 weeks where the consultant confirmed that there was more going on.
We were sent for another scan at 17 weeks, but at a specialist hospital and the news was worse than ever…
Our baby had cloacal extrophy which is an extremely rare condition, where not only is the stomach and bladder out of the body, but the genitals and anus are not formed and completely split into two. In addition to this there were also spinal deformities.
This is when we had to make the most difficult decision of our lives.
If we were to go ahead, our baby would need dozens of surgeries straight away and would live in Great Ormond Street Hospital for a long time. The baby would need a colosomy bag all it’s life and, if it was a boy, as he got older he would have the normal sexual urges but wouldn’t be able to act on them due to the reconstructive penis that he would have to look normal.
The physiological damage could be catastrophic.
I remember the thoughts of how sad my poor child would be when the inevitable bullying would happen at school due to wearing a bag and a nappy for leaks, and how awful things would be for him/her growing up struggling to live life.
It’s weird to remember this now because when my guilt kicks in I think about our baby not knowing any different, as the top half would have been perfectly fine, so I have to physically remind myself that it’s the longer term effects that helped us with our decision.
This was only half the reason why we decided to terminate the pregnancy, however. You see we had a daughter who would have only been 19 months old when baby was due.
Our daughters life would been turned upside down if her parents suddenly had to take turns to to live at Great Ormond Street to look after a baby she didn’t know.
I already had mummy guilt that she was at nursery full time because I had to work full time, so the thought of leaving her for weeks at a time when she was so young was incredibly difficult.
Thinking back now, she probably would have been fine and adapted very easily, but I am also in the Armed Forces, so I could have spent so much time at Great Ormond Street to then be assigned away from my family, so it was all too much to handle.
I felt sad when we made the decision and cried, but knew we were making the right decision for our family.
The day came to take the first tablet and the nurse said, “This is to stop pregnancy hormones that controls everything in your body to keep the pregnancy viable.”
What I heard was here is your pill to kill your baby, and I couldn’t stop crying that day. I was admitted 2 days later when I was 18 weeks exactly to start the induction. I felt ok when I got there, even when the nurse or midwife placed the tablet inside me- felt ok when the contractions started and felt like I was dealing with it. Then the baby fell out and I sobbed with my partner shouting “It’s out!!”
The baby fit into our hand and I just kept saying sorry. It was very clear that the insides were out through the belly button and the bottom half was such a mess no one could state what gender our baby was, hence why he never got a proper name and was named baby boy.
We had the memory box, the prints done and a couple of photos which I have looked in only twice since even 3 and half years later it is still raw!
We had the genetic sampling done, which thankfully showed that what our baby had wasn’t genetic, and just as importantly, we found out he was a boy.
His ashes are scattered in the special children’s garden at the hospital, and he will be forever in our hearts our baby boy xxx
We have since had a rainbow baby by the name of April, and the only way to describe having a baby after you have lost one, is that they don’t fill the hole in your heart, your heart just gets bigger. 💕💕💕💕💕💕
This is a guest post from Stephanie Maynard.
