Tommy's guest blog, 10/04/2017, by Hayley Colley
Premature birth is a leading cause of stillbirth and neonatal death in the UK. When a baby is born too soon it can mean that he or she hasn’t fully developed and may be unwell as a result.
After reading other people’s experiences of loss on the Tommy’s website and getting comfort from the knowledge that she is not alone, Hayley Colley was inspired to share her own experiences.
‘In the hope that it may help raise awareness and offer comfort to other bereaved parents.’
Hayley and her husband Steven have suffered recurrent losses since their first baby passed away nearly ten years ago.
What is IUGR?
IUGR stands for intrauterine growth restriction which is a condition that occurs in around 1 in every 100 pregnancies and is more commonly known as fetal growth restriction (FGR).
It slows the rate of a baby’s growth; sometimes leading to premature birth.
Tommy’s Placenta Clinic in Manchester is working to find ways of detecting those women at risk of FGR early in pregnancy.
Once FGR is detected, the worst outcome, stillbirth or neonatal death, is often preventable through intensive monitoring and early delivery.
The team are working hard to save families the heartbreak that Steven and Hayley endured due to this potentially devastating condition.
Six years after losing Emily Rose, Hayley sadly suffered a miscarriage at 7 weeks. She and Steven kept trying for a baby however, hoping they would be ‘third time lucky’.
‘One year later, in February of 2015 we were nervously pregnant again with our son Jack and daring to hope for our much longed for rainbow.’
Hayley’s pregnancy appeared to be progressing well until the 20 week scan where she and Steven were told that baby Jack was measuring small for his gestational age.
What happens if your baby does not seem to be getting bigger?
If your bump doesn’t appear to be growing you can ask for an extra antenatal appointment to be measured.
Hayley and Steven were referred to a specialist fetal medicine hospital for further scans.
More in depth scans confirmed that Jack was very little and his long bones were a lot smaller than they should have been. A two vessel umbilical cord was also confirmed.
A two vessel umbilical cord is when the cord has just one vein and one artery as opposed to one veins and two arteries.
In most cases this won’t affect your baby, but it does give a slightly increased risk of growth problems and stillbirth.
Hayley and Steven were told that their baby boy could possibly have had a chromosome abnormality or a skeletal dysphasia which could only be confirmed by an amniocentesis.
‘Due to previous losses we could not contemplate the risk of losing our little one as we knew this was a danger with the procedure. We declined the amnio knowing that we would love our baby no matter what the outcome. The consultant ordered growth scans for every four weeks moving forward.’
At 23 weeks Hayley developed high blood pressure and was admitted into hospital due to her history of pre-eclampsia.
Following treatment with blood pressure tablets and steroid injections in case of emergency C section, Hayley’s blood pressure stabilised and she was discharged.
After two days at home however, Hayley had to head back into hospital with raised blood pressure.
‘My blood pressure was raised again so was sent to the day assessment antenatal clinic where my consultant ordered a Doppler scan which revealed absent diastolic flow. Which mean our little one was not receiving the goodness he needed to grow. At this point our world, once again, came crashing down around us. We were told to expect the worst - we were told that our little one had stopped growing and that he would most likely pass away in my uterus within a week.’
Hayley and Steven were transferred to a nearby hospital with a specialist neonatal intensive care unit, where Jack could be cared for if emergency delivery was considered.
The risk of premature birth
A further in depth scanning revealed that the blood flow to Jack was absent but not as bad as originally thought.
Jack was estimated to only weigh 320 grams, however, and he needed to be at least 500 grams before they would consider delivery.
‘We were told again to prepare ourselves for the worst as we were informed there was no treatment for IUGR & because our tiny boy was so small the doctors believed it would be unlikely that he could survive long enough to gain the weight needed in order for him to be delivered.’
Hayley’s consultant put together a two week plan where she would stay in hospital to be monitored daily and another growth scan would be carried out in two weeks.
‘He told us to be prepared that we may not get that far and at any moment our little boy could pass away. We were utterly devastated but refused to give up on our little one, our lives for the next few weeks revolved around waiting to hear the comforting sound of his beautiful heartbeat every day and night.’
Because Jack was so small, Hayley was unable to feel his movements; ‘hearing his heart beating was our only assurance that he was still with us.’
Hayley and Steven fought hard to remain positive and calm, deciding on a name for Jack to help - Jack Thomas Colley.
After two weeks of hoping, Hayley and Steven made it to the growth scan and were told that baby Jack had grown and gained weight. He was estimated to be 480 grams.
Jack was still so small for his gestational age but Hayley and Steven were thrilled that he had managed to grow at all. This legs and arms had grown too, but sadly the scan also revealed the blood flow from the placenta was now absent.
Jack was delivered by emergency C Section the next day at 27 weeks and 1 day, weighing 440 grams.
‘He was perfect in every way but so incredibly tiny. Our beautiful little miracle boy fought to be with us for four precious days. We are so blessed and exceptionally grateful to have spent time with him, to sit and watch him, gently touch his tiny feet, talk to him and eventually hold him while he took his gentle final breath.’
Jack suffered a pulmonary haemorrhage and passed away peacefully in Hayley’s arms on 27th July 2015.
‘Our perfect son, forever in our hearts if not in our arms.’
Since Jack's passing, Hayley and Steven have found support from the Bro Morgannwg Baby Loss Support group, founded over 10 years ago to provide support to bereaved families.
Hayley says that the people they’ve found at this group have shown them ‘light and love in the darkest of times.’
‘Thank you for reading our story and a special thank you to Tommy’s for providing us with a platform to share our experience and raise awareness of IUGR and baby loss. The work Tommy’s does gives us hope for the future that maybe one day we will bring home our rainbow.’
Lead investigator Dr Edward Johnson says,
‘Our main ‘breakthrough’ is that we are increasingly able to characterise placentas as being abnormal or normal both before and after delivery. This means that we are getting ever closer to being able to identify ‘high-risk’ pregnancies before the onset of FGR.’
If you’ve been affected by any of the issues in this article and want to read more about fetal growth restriction you can take a look at our page on the causes, symptoms and management of FGR/IUGR.
Tommy’s Placenta Clinic is run as part of Tommy’s Stillbirth Research Centre at St Mary’s Hospital in Manchester. It is the largest placenta focused research group in the world and we are proud to be making that possible.
If you or someone you love is in a similar position to Hayley and Steven, you can read our information about where to access support if your premature baby passes away. Our Tommy’s midwives are trained in bereavement support and available if you need any information, advice or support. You can call our free information line 0800 0147 800 from 9 – 5, Monday – Friday.
My world had crashed. My baby could not have died. I was still pregnant, they must be wrong. Nobody is available to help me. What will I tell my Mum? What have I done wrong?
To us, she was perfect and the love we felt for her stronger than I had ever understood possible. In spite of our grief, we would never change our experience of knowing and loving Aisling.
What kept me going was the thought that I was doing this for my daughter Sophie, that I was doing this in her memory.
Losing your baby is one of the worst things you can experience in your life and the pain is unimaginable.