Special care

When the twins were born we sent out the obligatory text to friends and family. It said the usual – names and weights – but there was one slightly different addition at the end – “no need for special care”.

Expecting twins, we were always prepared from the start for the likelihood our babies would end up in the neonatal unit. There was a high chance they would arrive early (actually we managed full term at 37+2 weeks), and that they would be far below the average newborn weight. I can remember being stitched up after my c-section, waiting anxiously for the doctors to tell us whether Ez and Fonz were heading up to special care, or whether they’d be staying with me. We’d even been sleeping with cuddly toys and blankets for the last week so that if they did go to the unit they would have things with them that smelt of us.

We were lucky, and our babies got to stay with us.

But plenty of babies do spend time in special care, and through this blog, twitter, and my attendance at various twin groups, I’ve now met a lot of people whose baby or babies had a stay there, some of them for many, many long weeks.

When Huggies asked their team of Huggies’ Mums if we’d like to visit the Tommy’s Maternal & Fetal research unit and neonatal unit at St Thomas’ Hospital, I think we were all apprehensive. Some mums had experienced special care first-hand and understandably didn’t want to go back, others doubted that they were strong enough to deal with the emotions such a visit would provoke. I wondered the same, but I thought it would be such a powerful experience – one that should give me an insight into what a lot of friends had gone though.

So, the week before last, armed with packs of tissues and the promise that Catherine from BabyGenie would be just as much of a wreck as me, I met up with the teams from Huggies and Tommy’s at St Thomas’. We were introduced to Prof. Andrew Shennan (consultant obstetrician) and Annette Briley (research midwife and clinical trials manager) who work at Tommy’s London Research Centre, based at the hospital. Andy and Annette spoke to us about the centre and their research and these are some key points I learned:

  • Tommy’s is the only charity in the UK solely dedicated to funding research into miscarriage, premature birth and stillbirth. Every day in England and Wales alone, around 290 women experience a miscarriage, approximately 149 babies are born prematurely and 10 babies are stillborn. Despite a cost to the NHS of £2.9 billion a year (obesity costs £5.3 billion, smoking £3.3 billion and alcohol £3.3 billion), there is still traditionally little funding available for research into premature bith and pregnancy medical research in the UK.
  • The team at St Thomas’ runs a clinic to care for any women who have risk factors for preterm birth. The clinic accepts referrals from across the country and provides specialist care to try to prevent premature labour and miscarriage. Around 40 women a week are seen at the clinic, many of whom have had multiple miscarriages, yet 90% of those that visit leave with a healthy child.
  • One of the studies running at the research centre is called EQUIPP. The team has developed a piece of kit that can give them a very accurate indication whether a women is likely to go into early labour imminently. It measures fetal fibronectin – a protein which binds the membranes around the baby to the walls of the womb.  In a healthy pregnancy, it should be detectible at around 22 weeks, and not again until the end of pregnancy.  Tommy’s scientists have demonstrated that it is a reliable tool to predict if an early labour is imminent, especially when combined with an examination of the cervix. Using these tools, and the relative concentrations of fFn found in the neck of the vagina, they are now attempting to quantatively test the likelihood of women entering premature labour in order to give the women an absolute percentage risk.

On the day we weren’t able to visit the neonatal unit, though we did see photos and hear the story of one of the premature babies currently on the unit. I left that day feeling passionate about the work that Tommy’s helps to support, and keen to help in whatever way I can.

So how can we help?
One of Tommy’s big fundraising events are the Baby Races, sponsored by Huggies Club this year. The Baby Races are a series of runs, organised in partnership with Buggyfit. Runs/power-walks are taking place in Brighton, Cardiff, Northwich, Cheltenham and Windsor in September, and you can register to take part here. It costs £14.50 to enter and Tommy’s asks runners to aim to raise at least £50. If 200 runners were to raise this, the £10,000 made would be enough to pay for a research assistant on one of Tommy’s vital projects.

Please help to spread the word on Twitter! The hashtag is #babyraces; follow @tommys_baby and @huggies_uk. There are twibbons here.

2 comments to Special care

  • “Every day in England and Wales alone, around 290 women experience a miscarriage, approximately 149 babies are born prematurely and 10 babies are stillborn”… wow, those figures are really quite shocking – I’m amazed!

    I’m so thankful that, at 34 weeks, we only had to stay in for a week to establish their feeding/suckling reflex and I got to stay in a side-room with them. They had to be fed through nasal tubes, but don’t think we really thought about it that much and just got on with it… had they needed breathing support or anything more serious I think I would have been (more of) a nervous wreck!

    I’d love to be able to do more for Tommy’s (having also had 3 miscarriages!) and Bliss :)

  • During my pregnancy with Littler I was shocked to discover that the test for fetal fibronectin isn’t bog standard in the UK (it is in the US) – we had it because we were on the Isle of Wight and risking an evacuation off if I was about to labour, as it was whilst I was contracting at about 7 on the scale there was no protein so we were ok to put me back to bed

    Its such a simple test and avoids women and babies having steriods that they don’t need (and keeping them for when they do)

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