Pregnancy blog, 14/11/2016, by Susanne
I was 29 weeks pregnant and hadjust attended my first of four scheduled growth scans for baby number four. They’d been booked in because I’d previously had two small babies, and doctors wanted to keep an eye on the growth as a precaution. Between you and me, my husband and I only agreed to attend this appointment because the doctor had told us she would only support our plans for a VBAC if the growth scans went ok. We intended to do this one scan, and leave the rest to nature.
Our intentions seemed so plausible. Our baby seemed so strong. Our birth plans seemed so reasonable.
And yet, sitting in that small consulting room after the growth scan, our world began to tilt. Our baby wasn’t growing as well as doctors had hoped. We went from preparing for a pregnancy possibly advancing into at least 40 weeks (probably longer!) to a pregnancy being halted at just 34 weeks. That was the aim, all of a sudden. ‘Try’ to get to 34 weeks, but the doctors seemed doubtful even that would happen.
Our baby was too small. Our baby would need to be born early. Our baby was not coping inside of me.
Officially, our baby was diagnosed as IUGR. IntraUterine Growth Restriction. For some reason, she wasn’t growing well and she would need to be monitored closely. Unofficially, our baby was in trouble, and we had no clue how to help.
Should I eat more? Eat less? Exercise more? Exercise less? Had the anti sickness tablets caused her growth restriction, or was there an underlying condition at the root of it all? Doctors were unable to tell me, and each growth scan we had following that appointment simply told us what we already knew. She wasn’t big enough. She wasn’t going to make it to the end of this pregnancy.
We had doppler scans. I was taken in on numerous occasions to monitor her movements because I barely felt any at all. I had no idea what her pattern of movements was because I was simply too stressed to be able to focus. The days became a blur of appointments, anxiety and fear. Because I was scared. I was so scared that we were going to lose our baby. I was scared that they would take her out too early and she would be too small and too fragile to cope. I was scared that they would take her out too late, and she would lose her battle inside of me. I was scared to ask questions in case the answers were to take me down a path I didn’t want to go.
Looking back, my clinical care was excellent. We made it to 37 weeks! We got so far, and it’s all thanks to the doctors who monitored my care plan so closely. I was given steroids to mature my baby’s lungs and she was delivered via caesarean section, alive, breathing, well. Our first weeks were incredibly hard but I never once for one moment forgot just how lucky we were to have been able to take her home with us.
But while the clinical care so was amazing, the emotional care was non existent. My emotional wellbeing was in tatters. I was literally in pieces. Like many new mums, my fears and anxiety stemmed from events that happened long before this pregnancy. A previous traumatic birth, severe pregnancy sickness, anxiety, PTSD, insomnia, shattered birth plans… it all seemed to build up inside of me. Add to all of that the stress of an IUGR pregnancy, of repeated incidents of reduced movements, the agony of being unable to get any answers… I was a mess. I needed help. I needed support. I needed, if not answers, then someone to simply hold my hand. Explain the procedures should my baby be born early and require special care. Explain the effects an early delivery could have for us all. Explain the reasons, causes and possible outcomes of IUGR.
Instead I was met with silence. I was not supported, and because of this I set up a UK Facebook group to support other families in my position. With those ladies, I was able to breathe. Talk. Listen. Share. That group means the world to me now.
Women and families who are experiencing a stressful pregnancy need to be given consideration for emotional well being. They need to be offered a little support, a little more time. They need to flagged up as potential for needing that little bit extra. You can’t just assume that the medical side of things is all that we need. Yes, we need you to save our babies, to make sure they are born as well as can be. But you also need to remember that at the end of the successful delivery is a woman. A woman who has spent weeks and weeks with her hand resting on her belly just willing her baby to move. A woman who has travelled alone to so many scans, and has sat alone in so many waiting rooms absolutely terrified to hear what the outcome might be that day. A woman who has been so confused, so scared and so alone for weeks and weeks and weeks.
That woman was me. Is me. That woman, two years on, still needs that help and support. That woman could be your friend, your sister, your auntie.
With lots of help from the Child Growth Foundation, Tommy’s and the wonderful ladies in the IUGR UK Facebook group, we launched the #12DaysofIUGR campaign. We ran the awareness campaign from the 1st November to my daughter’s due date, the 12th. The response has been amazing, and we hope that as a result we have been able to reach more people, to let them know what it can be like and what needs to change.
For us, our outcome has been amazing. Elsie is a beautiful, feisty and strong willed two year old with absolutely no lasting effects of her troubled time in utero. She is courageous and she is determined, and because she is all of those things then I must be too. I am eternally grateful that she got to come home to us, and deeply sorry for all the families for whom the outcome was not as happy. And while I know that doctors just cannot give us any guarantees with an IUGR pregnancy, I know that there must be some out there who wish they could give us just a little more time. Maybe a longer appointment to talk about how we feel, or a quick tour of the special care ward. Just a little extra care, for us as well as our babies.
Shelley's baby Joseph was stillborn at 37 weeks. A post-mortem found that Joseph was suffering from intrauterine growth restriction
Intrauterine growth restriction (IUGR), also known as fetal growth restriction (FGR) is a condition in which a baby's growth slows or stops during pregnancy.
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By Midwife @Tommys on 20 Mar 2017 - 09:19
We are ever so sorry to hear of your loss. And thank you for your kind words and support. Please feel free to contact us by telephone or email if you need to discuss your loss, we are happy to listen and offer any advice. Look after yourself.
By Anonymous (not verified) on 20 Mar 2017 - 14:30
I have emailed you and not got a response. What's the best number and email to get you on?
By Midwife @Tommys on 16 Mar 2017 - 10:50
We are so sorry to hear about the loss of your daughter after experiencing IUGR in pregnancy, an emergency section and a lot of medical complications. We send all of our love and condolences to you and your family. Thank you for sharing your story with us! Look after yourself!
By L tang (not verified) on 17 Mar 2017 - 10:47
I'm going to tell my hospital about the work you do. I want all mums going through a high risk pregnancy like this and early delivery to get the much needed support that I didn't get. Sadly I only heard of what you do after my loss.
By L Tang (not verified) on 16 Mar 2017 - 10:48
My baby had IRGU at 20 weeks. She was delivered via emergency c-section at 28 weeks weighing 500g/1lb. After a courageous fight through various complications she died after 4 days in our arms. It still breaks my heart.