Baby Loss Awareness Week - Voice two- Samantha Jones

Samantha Jones of Storms & Rainbows writes about her quest for answers

Sam from Storms & Rainbows


October 2017

Baby loss is one of life’s twisted events that make us question ‘why’ something so cruel and heart-breaking happens in the world.

It is beyond unfair that babies die, yet it is sadly happening everyday - in pregnancy, during labour, after birth. No matter the age or gestation, all any bereaved parent wants to know is – why has this happened to me? Why did my baby have to die? Knowing there’s a valid reason or cause is the only way to make sense of something so devastating.

We have lost 4 babies since trying to start a family three years ago - 3 to early miscarriage and our son, Guy, who was stillborn at 25 weeks.

We have spent the past 2 years searching for answers.

The need to find a cause for so many consecutive losses has been our coping mechanism, a driving force helping us stay strong enough to carry on trying to bring home a living baby. I can only liken this ‘need’ to when you become unwell, your instant reaction is to find the cause of your illness and treat it.  Going through recurrent loss sets off that same instinctive reaction - there must be something wrong, let’s find the cause and treat it.

When Guy died, we faced the difficult decision about post-mortem. Although we knew there was a problem with his placenta, we had been advised to consent for post-mortem in case there were other issues that could have contributed to his death. It felt so cruel to know our tiny little boy would be put through something so invasive, but we knew we would never fully know why he died if we refused it. We tried to make something positive out of it and rationalised that Guy would be doing this to help his future siblings. Other than a poorly developed placenta, he was perfect. We felt some comfort in the fact that we had a valid reason for his death, and relief that there wasn’t anything stopping us from trying again.

Nine months after Guy died, we had another miscarriage.

We couldn’t believe that this was happening again and desperately needed to find answers. Most NHS Trusts don’t routinely investigate unless you’ve had three consecutive miscarriages. So, we didn’t think we’d be eligible due to Guy being stillborn. We were referred to the recurrent miscarriage clinic who thankfully had no issues carrying out all the investigations they had to offer.

I know there are some NHS Trusts that are only able to offer limited tests. We are lucky that the Trust we were being cared for provides a full range of investigations, such as blood tests for lupus, coeliac disease, thrombophilia (sticky blood), thyroid function tests, and vitamin D deficiency. I also had ultrasound and MRI scans of my uterus as well as a hysteroscopy. Everything came back normal.

In February, we suffered yet another miscarriage, our fourth loss. We couldn’t understand it. We’d had so many investigations, all of which came back normal. There was no obvious reason for our miscarriages, so why was it happening again?

Having exhausted all our NHS options and still feeling the need for answers, we turned to Tommy’s and their National Miscarriage centre. We had heard about their research into Natural Killer Cells and how they link to miscarriage, and decided that this would be our next port of call.

Our first appointment was in June and we met Professor Jan Brosens. After taking note of our pregnancy history and previous investigations, Prof Brosens sat back and explained all about the mystery of miscarriage. He said that miscarriage is biology, a result of the body's natural quality checks on a developing pregnancy. He explained that every embryo is unique - if something isn't right, it will be rejected and miscarriage occurs. Every cycle, the lining of the uterus is also unique. If the structure of the lining is poor, a fertilised egg can't implant and develop well, therefore results in miscarriage.  A successful pregnancy requires both the embryo and the uterus lining to both be perfect at the same time (I seriously wonder how people get pregnant and stay pregnant at all!).

We could have listened to Prof Brosens talk all day, he was fascinating. He is so knowledgeable and the way he simply explained miscarriage just clicked with us. He validated miscarriage being so common with physiology rather than clichés. His words and manner were hypnotising, we instantly felt so much more hopeful and confident.

After the consultation, we went to get our biopsy taken and returned around 5 weeks later for our second biopsy. Our results were sent to us by email a few weeks after each appointment, and would you believe... all normal. Well there's nothing like a bit of consistency, hey? Prof Brosens reviewed our results and has kindly given us some recommendations for our next pregnancy.

Going to Coventry was costly (£540 for the NKcell testing, plus our train travel from Manchester to Coventry) but it was 100% worth it. We are so glad we went. There's some promising results about endometrial scratches and recurrent miscarriage coming out of Coventry's research, and we have had two! This could just be all that is needed to help the next pregnancy stick around.

We may still be no closer to finding a cause for our miscarriages, but we have gained confidence and feel inspired by the professionals we have met through Tommy’s miscarriage centre.

After the last miscarriage, we were so driven by the need to find answers. Surely so many recurrent losses couldn't be for no reason? We felt as long as there was a test or investigation to be done, we had the strength to keep wading through the storm.

However, 12 months of searching and many 'normal' investigations later, we have accepted that we may never find a cause for our miscarriages. There’s no illness to fix, no complications preventing us from conceiving or carrying a pregnancy, we have just been ridiculously unlucky.

Here’s to the next pregnancy bringing all of the rainbows.

Read more of Sam's journey on her blog, Storms & Rainbows

7 voices for 7 days

Read more about Baby Loss Awareness Week 2017

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