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This Is What an IUGR Pregnancy Is Really Like

02/10/2015 11:32 BST | Updated 02/10/2016 10:12 BST

An IUGR pregnancy is not straight forward. It is not relaxed, or enjoyable. It is not one of the most special times of your life. Instead, it is filled with unanswered questions, stress and worry. It is fragile. It is complicated. This is what an IUGR pregnancy is really like.

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Our scheduled growth scan had gone ahead as planned, mainly to keep the doctors onside so that I could have my much wanted VBAC signed off by the midwives. And as we waited to see the consultant, I made my first mistake. I googled the predicted birth weight the sonographer had given us, if only to confirm my belief that there was nothing wrong with my baby. Oh, what a mistake to consult Dr Google so early on.

Page after page of cautions and warnings. Your baby has IUGR. Your baby is not growing. Your baby is too small!

When the doctor arrived, she barely looked at us before embarking upon a plan of action to try and get this pregnancy to at least 34 weeks before removing the baby via c-section.

And then it got real. This is what an IUGR pregnancy is really like.

There's no time for waiting and seeing. There's no time for pleasantries in the consulting room. There's no time to stop, and think.

From the moment you're told your baby is not growing well, you feel a little like a ticking time bomb. Each hospital appointment brings stress and fear into your bones. You pack your bag and take it with you each time, in case this is the week that they tell you your pregnancy must end. Baby must be delivered now. Baby is, finally, better out than in.

You walk out of the hospital each week with a huge sense of relief coursing through your veins. Your bag weighs heavy in your hand once more, and you think about replacing those prem vests with tiny baby vests instead, seeing as your baby is going to make it inside for another week. And then you realise that one more week might not be long enough for baby to graduate onto tiny baby vests after all.

And with that, the relief starts to fade and you enter another week of watiting and hoping. Another week of scouring the internet for stories like yours, for advice, for support. Another week of knowing that the risks associated with IUGR might just mean that this baby won't make it home after all. Another week where Dr Google scares the hell out of you.

And in between the scans and check ups, there is the CTG monitoring. Watching the numbers leap and fall, leap and fall. Hearing your baby's heartbeat rattle on. Willing your baby to move, just a little.

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And those little vests stay packed in your bag because you know that one of these days, they're going to keep you in. And take your baby out.

Failure to thrive.

Too small.

Low birth weight.

At risk.

You know that a percentage of IUGR babies are stillborn, either because the condition is undetected or because they are not delivered soon enough. You know that a VBAC is now completely out of the question because your baby is too small to survive the stress, but that doesn't help the desperate grieving that has already begun. You know that this is a journey that has only just begun.

'Unexplained IUGR' didn't cut it for me. I knew that my baby was small, way below the 10th centile. And I knew that meant IUGR. But I wanted to know why. Blood flow had improved after an alarming doppler scan. Fluids were fine. My blood pressure was fine. My placenta was not located too low. I am not diabetic. I do not have a blood clotting disease. I don't smoke, drink, or take drugs. I eat well. I exercise sensibly. I was not underweight before pregnancy and I was gaining enough weight throughout. I was healthy! And yet my baby had unexplained IUGR.

40-60% of IUGR cases are unexplained, and for those women they possibly never get the answers to their questions.

Blood flow remained fine for me. All of the above was discounted, but I didn't want to be unexplained, when I had so much to potentially lose. I wanted answers. Answers that midwives couldn't give me because my case was being dealt with by the doctors. Answers that the doctors couldn't or wouldn't give me. Answers that I still do not have.

Yes, my baby came home.

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My baby is about to celebrate her first birthday. But so many do not. So many women endure an IUGR pregnancy without the answers to their questions. With no support. With no information. With no explanations. Unless a clear problem is detected, these women are not referred to specialists who may be able to answer their questions. They are not given any guidance on what to expect when their baby is born. They are not told just how challenging a newborn IUGR baby can be.

This has to change! Women need to be supported. We need that shoulder to cry on, that source of support to call on when our nerves are in shreds. That reassurance, that courage. We need the strength that comes with knowledge. We need to know that we are not alone, and that we matter. Our babies matter. They may be small, but they matter.

As part of #MatExp's #OxytocinOctober I intend to make some changes happen. It's too late for me, but it won't be too late for the next woman about to walk my path.