I was elated. Finally pregnant and in the “safe zone” after years of fertility struggles, rounds of IVF and two miscarriages. We’d had the all-clear from our midway anomaly scan and I felt like the luckiest person in the world. Aside from some bleeding which the consultants had reassured me about, the pregnancy was proving to be straight forward and I was excitedly watching my bump start to pop
Everything changed one Sunday evening. At 20+2 weeks, completely out of the blue, I started leaking fluid and immediately knew something was very wrong.
I attended triage at the hospital responsible for my antenatal care. Upon examination I was told that my waters had completely gone and that the midwives were so sorry, my baby would be born and he would die.
Due to Covid rules I was forced to attend the exam and receive this news all alone, my partner anxiously awaiting news outside of the hospital doors.
I was rushed to the Labour ward on the pretence that I would be imminently delivering our baby. Finally, my partner was allowed to join me and the obstetrics team warned us that my baby had to be born and if I didn’t go into active labour then I needed to consider terminating my pregnancy.
After frantic google searches we came across Little Heartbeats, and Ciara Curran particularly, who educated us on PPROM. She explained that at even such an early gestation there was a small chance of continuing my pregnancy to allow our Son to have a chance of survival.
Little Heartbeats supported us to become advocates for our baby and push back with confidence when we were put under continuous pressure by the obstetrics team to terminate the pregnancy. The obstetricians were concerned about infection as my CRP markers and white blood cell count was raised. The doctor’s warned that I could myself fall seriously ill with an infection that could turn to sepsis.
They were reluctant to prescribe antibiotics as they told me this isn’t part of the official guidelines in the U.K. on how PPROM should be treated.
Their primary route of action was was to terminate the pregnancy, explaining the infection was likely in my uterus and would only be cleared once the baby was born.
With Little Heartbeats support we knew we needed to keep fighting to give our boy a chance. They armed us with confidence and case studies to help us argue our case, and eventually, the Obstetrics team agreed to palliative care with me as an inpatient.
My infection markers were monitored twice a day whilst keeping a lookout for signs of active labour and continuous doppler checks to ensure our boy’s heartbeat was healthy and strong.
Through this charitable non profit organisation, we now had an understanding of what medication I needed as well as other tests that should be done to help prolong my pregnancy.
We connected with their Facebook support pages and other parents in very similar situations. This became a complete lifeline of support and hope which got us through the coming days and weeks.
We also fought to be transferred to a level 3 NICU hospital following advice from Little Heartbeats which is where I went on to give birth.
Our sweet little baby boy, Teddy, was born extremely prematurely 17 days after the initial rupture at 22+5 weeks of pregnancy
and fought so magnificently for a week in NICU. He was born weighing 430g and defied all odds by surviving birth, then getting through the first 24hours and continued to be brave by fighting to stay with us.
Teddy suffered many health complications due to his early gestation which meant devastatingly he eventually became too weak to continue to fight.
When all hope was lost, we made the heartbreaking decision to take him off the ventilator to spend time cuddling and kissing him.
He passed away in my arms at 1 week old. I truly believe that if I had managed to avoid PPROM initially, by just a few days, or if there was a little extra time between PPROM and birth, that Teddy would still be with us.
This is why better education is needed of PPROM prevention, and how to treat a woman once it happens. Having a baby in NICU is by far the most horrific thing we have ever experienced, the feeling of being completely out of control, totally sleep deprived and the sheer worry of it all is terrifying.
That being said, Teddy deserved to be given a chance to live. We gave him that thanks to Little Heartbeats.
Our story is not one with a happy ending and we have been completely and utterly broken by this. Our longed-for darling boy wasn’t one of the lucky ones to make it through to the other side and come home with us.
Whilst planning Teddy’s funeral we knew that we wanted to ask our family and friends to kindly donate to two charities that significantly supported and helped the three of us.
We’ve managed to raise £1600 for Little Heartbeats so far and know that this money will be of huge benefit to the PPROM research study currently happening, as well as helping this small charitable non profit organisation to continue to provide PPROM support care packs to parents who are currently in this terrifying situation. Teddy passed away nearly 4 months ago and, at the time of writing this, his due date is a few days away.
Dealing with our grief hasn’t got much easier and we miss him every second of the day. No good can ever come from his death, however, we hope and pray that the money we’ve raised will go towards providing better education into PPROM, risk factors, prevention and better care for all those mums in the thick of it in hospital. We can only hope that our small gesture in Teddy’s name will in the future help more babies to survive and go home with their parents.
We now understand that the bleeding I’d experience had resulted in pooled blood in my uterus, and that was the likely cause of infection and PPROM. I am truly bewildered by the lack of education surrounding PPROM in the U.K.
There is a significant gap in research into PPROM, and until it happened to me, I had never even heard of it. The standard response by Obstetrics teams up and down the Country to terminate the pregnancy is wrong, traumatic and outdated and change is critical. I am truly thankful that Little Heartbeats are beating the drum to raise awareness and thankful for their support in our time of need.
Kirsty & Tony
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