Tommy's guest blog, 16/11/2016, by Karen Jones
With 60,000 babies being born preterm every year in the UK, Tommy’s are dedicated to funding research into the causes of premature birth and how we can prevent it.
Whilst our prematurity research centre and Preterm Surveillance Clinic in London are making important advances, Clinical Director Professor Andy Shennan says we still have a lot to learn.
‘We have always known that premature birth is a difficult problem. Historically, the issue has been that we have not had the tools to detect it, the knowledge to know why it is happening and, most importantly, we have not been sure what to do about it. Unfortunately, in some cases we still don’t know why babies are born too early but our knowledge in this area is increasing enormously. We are being able to help women who ten years ago we wouldn’t have been able to.’
Tommy’s supporter Karen Jones had healthy full term pregnancies with her first two children.
Karen was completely unprepared and horrified when at 27 weeks her waters broke and she realised her third baby could be on the way 13 weeks too soon.
Once in hospital, Karen took part in the ORACLE trial which tested the effect of antibiotics given to women suffering a prelabour rupture of their fetal membranes, one of the most common risk factors of preterm birth.
Here is Karen’s story of preterm labour and the ORACLE trial
Following two normal full term pregnancies and low intervention in the births of Sam (now aged 23) born in a hospital birthing pool and Alice (now aged 22) and born in the bath at home (!), the arrival of our third child, Elinor, could not have been more unexpected or different.
To be fair, I had expressed misgivings to my midwife during my pregnancy; despite nothing apparently being wrong, something did not feel right!
However when, at just 27 weeks, I awoke during the middle of the night to realise that my waters had broken; my initial thoughts that Sam (then 5 and going through a phase of coming in during the night) had wet our bed then turned quickly to shock and horror as I realised that my unborn baby could be on the way, 13 weeks too soon.
Calling on a friend to stay with the children, my husband, Andy, drove me quickly to the hospital maternity unit, luckily, just 10 minutes away.
My memories of the initial examinations, the questions of the young house officer on duty, the fear, the enormous needle used to administer the steroids, vital for the underdeveloped baby’s lungs, still remain with me now, all these years later.
We were very soon asked if we would be interested in taking part in the ORACLE trial.
I must admit to really not understanding initially what was being discussed – I was frightened, truly believing I was losing my baby and not really thinking straight!
We said we would think about it.
A little later, settled into a room on the maternity ward, though unfortunately with the sound of newborn babies all around me, I was able to think more clearly and talked in more detail to a midwife about the ORACLE trial and what it involved.
The research was to see whether giving antibiotics to mothers experiencing early rupture of the membranes affected the outcome for pre-term babies.
Although we were still uncertain what would happen with our baby, we felt it was something we should do and agreed to take part.
I was kept on the ward for the next two weeks, constantly monitored and scanned and given the tablets for the trial as required.
Although my waters had broken, it was explained that it was perfectly possible for them to reseal, with some women even going to full term!
The saddest bit was being parted from Sam and Alice, but friends and family rallied round to help and they visited me regularly.
I developed gestational diabetes and problems with my veins but tried to balance rest with regular walks around the ward.
I visited SCBU to meet the team there – I could not believe how tiny the babies were and that this was happening to us.
At 29 weeks, the first pangs of labour started in the middle of the night. It had been decided by my consultant that I would require a caesarean and that a general anaesthetic would be administered as the delivery was likely to be more complicated than one at full term.
Part of me wanted to be awake to see my baby, I was terrified she would not survive, but I went with their recommendations.
Elinor was born at just before 3am, weighing 1.360kg (just under 3lbs), considered a good weight for 29 weeks.
My husband went up to the ward with her and was able to report, when I came around from the anaesthetic, that she was doing very well, breathing unaided, with just some oxygen.
I was desperate to see her and persuaded the midwives to organise a wheelchair for me as soon as possible.
I will never forget the first time I saw Elinor, tiny, quite hairy and dark skinned, lying covered in tubes in her incubator, and the feelings of sadness at not being able to hold her.
Luckily both she and I were considered well enough that evening for our first quick cuddle, a wonderful moment.
Elinor stayed in SCBU for 6 weeks, a difficult period of juggling for the whole family, particularly as it included Christmas.
Elinor had two brain bleeds, significant jaundice and countless tests and scans but thankfully did not require ventilating or a blood transfusion.
Breast feeding and expressing milk to be given via the tube down to her stomach were not the easiest tasks on a busy SCBU unit and I really felt for the first-time mothers as they tackled this. Having fed my other babies for nearly a year each, I was fortunate to have experience but it still was not easy!
Elinor managed a feed from me a day though was too weak to do more, but that feed was a fantastic for us both
On New Year’s Eve we were given the best present ever – Elinor weighed just under 4lbs and we could take her home!
It was nerve racking at times caring for such a tiny baby, and whoever warned me that premature babies cry more was right, but it was fantastic to be home as a family after so long.
Although Elinor has since faced some considerable health challenges, particularly during her teenage years, none are associated with her prematurity.
Some of her earliest memories are of visiting the Special Care Baby Unit at Wrexham Maelor Hospital and the team who cared for her, and we still keep in touch, sending cards and photos, plus prizes for fundraising raffles and money for cakes for the staff!
Elinor is now celebrating her 18th birthday this month and her early start seems a long time ago.
She is a very hardworking, diligent and active young woman, who achieved 12 A*s at GCSE plus 4 A Grades at AS Level and who loves rowing, competing at rowing regattas all over the South West.
Currently in her final year at school, studying for A levels in Chemistry, Biology, Physics and English, she has recently applied for Medical School, hoping to follow her dream since childhood of becoming a doctor one day.
A nurse in SCBU once dubbed her Elinor ‘Determination’ Jones and this name could not have been more appropriate so far!
We will never know whether we were given the antibiotics or the placebo in the ORACLE trial but we will always be grateful to the doctors and nurses who cared for us all during this difficult time and beyond, and also to the ORACLE team for devoting themselves to such valuable research.
To parents of premature babies who may read this I wish you all the very best.
If you are caring for your preterm baby and want to download our free app for parents of premature babies you can do so here. It will help you keep a track of your baby’s development and growth as well as connecting you with parents in similar situations.
You can read all of our information pages about premature birth here which give support and advice from birth, to that all important first cuddle and beyond.
If you’re interested in the work of our Preterm Surveillance Clinic and want to hear more about what Tommy’s is doing to address premature birth you can read all about our prematurity research here.
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