Tommy's guest blog 19/10/2017 by Catherine Jayaram
Around 60,000 babies are born prematurely each year in the UK and many suffer lifelong consequences as a result.
Tommy’s prematurity research centre in London is based at St Thomas’ Hospital and is dedicated to improving the outcomes for babies who are born preterm.
Our Preterm Surveillance Clinic, run by Professor Andy Shennan, has successfully reduced the number of premature births in South East London from 9.2% to 7.8%.
“We are very proud that our clinic is bucking the trend, by offering a unique package of care for high-risk women, based on best research and clinical evidence.” Professor Andy Shennan
Many of the women who go to the clinic have had multiple pregnancy losses but an incredible 90% go of these “high risk” women go on to have a healthy baby.
Catherine Jayaram went to Professor Shennan after a previously loss made her concerned about the fate of the baby she was carrying.
Here is her story
My journey with the preterm surveillance clinic began back in October 2014 when I was 6 weeks pregnant.
In April the same year I had suffered a loss at 22 weeks and 6 days. My local hospital felt I had simply been unlucky and drew up a plan for a subsequent pregnancy that involved a cervical length check at 16 weeks and a swab at 20.
I felt my loss may have been related to cervical surgery I had previously had, but was told it was a possibility but probably unrelated.
When I got my little blue line on the pregnancy test my anxiety rocketed and I began to look online for reassurance.
I found a fantastic support group on Facebook, the UK TAC support group, for ladies with cervical incompetence who may need an abdominal cerlage.
I put my history to them and they strongly advised me to contact Professor Shennan at St Thomas' so I did just that.
I dropped him an email and within a few hours he had responded asking me if I could attend his clinic the following Wednesday.
At my appointment Professor Shennan took my history then performed an internal scan which revealed I had a very short cervix.
He was quite frank, explaining that I needed a high vaginal stitch and that I was very unlikely to make it to term without intervention. I had several risk factors that made me high risk for preterm birth.
At 9 weeks he performed the procedure and I was now under the care of the preterm surveillance clinic.
My care was shared with my local hospital but for checks I would return to St Thomas' an hour away by train from my home, it was a small price to pay for the care I would receive.
After having my stitch placed I went to my local hospital for booking, with the stitch in place they told me there would be no further checks performed by them. They didn't feel they were necessary as if the stitch did fail there would be nothing they could do other than remove it and wait for nature to take its course.
When you are pregnant following a loss you are understandably highly anxious, to be told that if things did go wrong there was little that could be done was incredibly disheartening.
At 15 weeks I returned to the clinic for a check. The preterm clinic is always on Wednesdays at St Thomas' and my appointment was in the morning but if I had any issues I could return as a walk in at any time in the afternoon.
The check consisted again of an internal scan to measure the cervical length and also a sneaky peek at the baby!!
The stitch was doing its job – my baby was happy and I was happy.
A further appointment was made for 4 weeks time and I went back home to enjoy Christmas with my husband and our then 6 year old.
My next visit to the clinic proved to be the most difficult, this time the internal scan revealed my cervix had changed, I was 2cm dilated with bulging membranes.
All of a sudden everyone was serious, quietly studying the screen, I was devastated.
My cervix had been dilating and I had no clue. No symptoms.
In my mind my pregnancy would be coming to end just like my previous one, the words of the consultant at my local hospital rang through my head, there was nothing more that could be done, I just lay there sobbing.
The team had other ideas though, they weren't prepared to just stand by and do nothing. They explained they were willing to do a rescue stitch, a second stitch.
I was incredulous, there were risks, my waters could break, infection, and of course I could still lose my precious baby, but the alternative of leaving things as they were meant the risks of losing her were equally as high.
I was just so thankful that they were prepared to try and save my baby.
The second stitch was placed later that evening, and it went remarkably well, I stayed in on bedrest for a week and returned this time downstairs to the "prem clinic" as it was known on the ward at now 20 weeks.
By now I was used to the routine, an internal scan to check the stitch and cervical length and another sneaky peek at baby.
I was still 4 weeks from viability, so the team decided it would be better for me to return home with a view to possible admission at 24 weeks. Before leaving I was assured that I could contact the team anytime and that if I did need to be admitted to my local hospital they could liaise with the clinic.
Weeks 20 to 24 seemed to go on forever but finally at 24 weeks I returned to the prem clinic, much to the delight of the team.
This time I had the internal scan but also a swab measuring fetal fibronectin (FFN) this is a test that helps them determine the chances of premature labour, they take the swab and then get the results about 10 mins later. It gives a positive or negative result and a value.
My result was positive, so they decided to admit me. They also took into consideration the fact that I was 24 weeks if I did deliver now my baby would need a level 3 NICU which St Thomas' has.
I was admitted to the ward and was given a steroid injection to help mature the baby's lungs in the event I did deliver.
I was reviewed daily by the ward team as well as managed by the prem clinic. The next few weeks I fell into the routine of being taken downstairs every Wednesday to the clinic, an internal scan and the FFN.
At 25 weeks my cervix began to dilate again and by now I knew I was looking at having a premature baby. I had a further steroid injection and was introduced to one of the neonatal consultants, bed rest continued and slowly the days passed.
The team gave me the Tommy's book on having a premature baby and I mentally tried to prepare.
The next 2 Wednesday clinics were the same, my cervix continued to dilate, although things weren't changing for the better in that respect, I still found the clinic days to be reassuring.
The team were genuinely delighted at how far I had come; it felt like my pregnancy was as important to them as it was to me.
My final clinic visit took place when I was exactly 28 weeks pregnant, and it was a day of celebration, I had graduated!!
I had gone from nearly losing my baby at 19 weeks to 28 weeks with my baby now standing a good chance.
My baby was now at a gestation that meant she could be suitably looked after in a level 2 neonatal unit. My chances of delivery in the next 4 weeks were still high but a baby born after 28 weeks was far better than a baby delivered before viability.
At 28+4 I was transferred back to my local hospital, and just a few days later at 29+1 my precious rainbow Priya was born weighing 2lb 15 oz.
Priya's NICU ride wasn't easy, she developed a potentially fatal gut infection at 6 days old and 2 days later required emergency surgery for a perforated bowel. I feel if she had been born at an earlier gestation and not received steroids as she did she may not have survived.
Priya came home after 67 days in hospital, without oxygen and today is a healthy happy 18 month old.
The fact that Priya survived pregnancy past viability is purely down to Professor Shennan and his team, their knowledge means they can correctly identify risk factors and offer treatments that many hospitals, including my local hospital, can't.
Words cannot express the level of gratitude I have for the clinic, I just hope that one day the care given at these clinics becomes a national standard, so that more women like me can have a positive ending, and more importantly bring our babies home.
To read more about the cervical stitch that Catherine had put in click here. You can also read our response to recent controversy over the stitch and Professor Andy Shennan’s reassurance in this article.