Coping with Miscarriage and Difficult Decisions: One Mama’s Story

Many pregnancies do not make it to full term and the grief for the expectant parents can be hard to bear. One strong mama shares her story and reaches out to other parents who have experienced loss. For more information, read Miscarriage Support in the Netherlands.

A Scan

“There’s the heartbeat. Head. Two arms … and legs. Baby looks perfect,” the Echo lady exclaims enthusiastically. Gripping each other’s hands tightly, my husband and I let out a huge sigh of relief. But we’re not out of the woods yet and past experience has taught us not to get our hopes up too soon.

Two weeks later and we’re back there again for the Combinatie Test. We are mesmerised by the image on screen and all looks well to our untrained eyes. But suddenly the same Echo lady says something that jerks us out of our reverie. “I’m getting a very high measurement for the liquid behind the neck. It’s more than double the usual width of 2mm.” She double-checks, does some calculations, and then drops the bombshell: “I’m afraid you have a 1 in 5 chance of having a serious defect such as Down Syndrome.”

I can’t speak for the lump in my throat and am guided to a nearby café by my husband to try and process the news. 1 in 5 chance – the probability is terrifying. We then try to comfort ourselves … 4 in 5 is a much higher chance everything’s OK. Right?

Amniocentesis Test

Because of the high reading, I am referred immediately to have an amniocentesis test at the VU Hospital. I had hoped to have a NIPT blood test, a recent development that gives a 98% accuracy rate. However, 100% is needed in our situation and this invasive test will provide it. Not without its risks though.

At the VU, the large team of medical staff assembled in the room brings home that risk to me. I try to relax as the two gynaecologists explain what’s going to happen. One of them will insert the long thick needle into the placenta, while the other watches on screen to ensure the needle is not endangering the foetus.

I close my eyes as everyone else watches the screen overhead. Because the baby is in an awkward position, they decide the test cannot be done abdominally and must instead be inserted through the birth canal. Thankfully, the local anaesthetic means it’s all done with a minimal level of discomfort. Afterwards, the two experts talk us through next steps in a counselling room. We will receive a phone call in five days with the result.

A World Away from Cheerful Midwife Waiting Rooms

I answer the phone at the specified time and as soon as the lady asks if I have a family member present with me – I know the answer. Our baby has tested positive for Down’s.

I always knew that the risk increases for women at 40 but I hadn’t realised just how much that multiplies at 41, my age. Once again, we were back in the hospital Polikliniek system, a world away from cheerful midwife waiting rooms, and full of couples trying to conceive or deal with difficult pregnancies.

Earlier that year, I had been a regular visitor to the VU due to a missed miscarriage. That’s when the foetus dies but remains in the womb with no obvious sign that anything is wrong. So it was a complete shock when we went to the first echo and discovered we had indeed miscarried. The choice to remove the foetus was either pills or a curettage operation. Had I known that pills would result in months of blood loss and scans showing an incomplete removal, I’d have chosen the curettage instantly. Eventually, I had to have one anyway, a surprisingly quick and easy operation done under complete anaesthetic, that would have avoided the extreme anaemia and low blood pressure I’d developed as a result.

So Many Women Affected by Miscarriage

Miscarriage is rarely talked about openly but as soon as it is, you realise just how many women it affects. It’s like opening the floodgates, with friends and family members all suddenly sharing their own private experiences. There is no way of understanding “why”, just the eventual acceptance that Mother Nature was acting to stop unhealthy chromosomes.

By far the most emotional miscarriage I experienced was my first, six years earlier, when the bleeding started on New Year’s Day. At that point, we had no assurances our path to parenthood would be successful. Thankfully our beautiful daughter was born a year later and at that moment I made a deal with Mother Nature: that if I was meant to have more children then that would be wonderful – but I’d also be eternally grateful for just having the one.  

Sometimes I do wonder why 3 out of my 4 pregnancies failed. A family friend and nurse gave one possible explanation: that some women can only carry one gender, that being typically a girl. It certainly rings true with several friends who have had a daughter – followed by multiple miscarriages – before finally going on to have another girl. But that’s purely anecdotal, of course, as most miscarriages occur in the first 10 weeks before the gender has been determined.

Acting on a Positive Result

This wasn’t the case, however, with our baby who tested positive for Down’s and who turned out to be a boy. After receiving the test result over the phone, we went to a counselling session at the VU to discuss terminating the pregnancy. “People who have the Combinatie Test do so because they want to act on that result,” the expert assured us. “Those that don’t want to terminate, don’t usually do the test.”

A legal “cooling off” period of 5 days followed to ensure we were 100% certain about our decision. However, that took us to 14 weeks and I was horrified to discover at the next counselling session that it was then too late for a curettage. The only option at that stage was to be induced and give birth “naturally”. It felt like a never-ending nightmare.  

Looking back at that day in the VU maternity ward, I am amazed at how smoothly it went. We had our own private room and a wonderful midwife. Although I’d previously had a Dutch, natural birth with my daughter, I readily accepted all painkilling drugs on this occasion, and was quickly floating on a morphine cloud after the pills had been inserted to bring on the contractions.

I had been particularly nervous about how long I would be in hospital and who would look after our daughter if we were away more than one night. But everything happened remarkably quickly. Tucked up in bed watching the lunchtime news, I suddenly felt the baby shoot out when I chuckled at Boris Johnson singing Chumbawamba. Both equally unexpected.

Amazing Hospital Staff

My experience of the VU staff was amazing throughout, especially that day. I’d been adamant that I did not want to see the baby as I’d find it too difficult. So they took my husband to see him and say goodbye. Experts came to check the body and confirmed that the defects were severe, requiring years of surgery for a double cleft lip and other physical disabilities, had the pregnancy gone full term.

The whole experience was incredibly dignified and we were encouraged to think of our baby as a person rather than a 4-month foetus. The midwife even took photos and put them on a USB for me to view at a later stage; something I found extremely bizarre but strangely comforting when I did finally force myself to look on his due date.

Explaining Loss To A Child and Moving On

For me, the grieving process has not been a straightforward one of moving steadily forward. Immediately after, all I felt was relief that the ordeal was over and that we had our daughter.

Counselling sessions with a social worker were good for encouraging us to tell our 4-year old, whom we’d purposefully tried to protect from it all. My fears instantly evaporated when she gave me a big hug and said, “It’s alright Mummy, our baby is playing with Holly the Dog now.” I’m so glad we shared it with her, as the social worker suggested, discussing it openly, as a family, rather than keeping it a secret.

I suffered from acute fear and anxiety for months afterwards (a typical symptom of grief, I’ve since been told). And the feeling of loss was overwhelming five months later, when the due date came in April. Everywhere I looked were beautiful spring babies and happy mothers. I didn’t feel bitter or resentful, just wistful that it could have been me.

In the fullness of time, I’m sure all will be revealed as to why our lives took a different turn. 

In the meantime, talking to other mamas who have been through a similar experience is a huge help. It’s easy to forget when sitting in playgrounds surrounded by happy healthy infants, just how many babies didn’t make it into the world, and the many parents who have struggled through this loss too. I hold my hands out and say be kind to ourselves and to one another.

If you have experienced pregnancy loss and would like to talk about it, Steph Smith can be contacted via the Amsterdam Mamas forum.