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John Warden

Dilemma of Ending Benedict's Pregnancy


1997 started well.  We were thrilled to be expecting, at last, our fourth child.  No one knew about the pregnancy, not even our three girls, Colette, Elizabeth Ann and Eugenie, who were 8, 5 and 2. 

During March of 1997, Alexa began to feel something was wrong.  She became increasingly distressed that the baby moved so little.  Over a period of weeks our anxiety increased and I managed to get the 20-week scan brought forward a little.

That day it was as if the ground had fallen from under our feet.  The radiographer told us that Alexa's misgivings were well founded.  Our baby had very severe problems.  Later that day our consultant carried out another scan and told us that that Benedict's condition was inoperable.  We went home in shock to try and make sense of what we'd been told before we came back the next day.

It's so easy to misunderstand

That was a very long night.  We had just seen Benedict for the first time on the ultrasound, his little face and tiny hands.  We watched him sucking his thumb.  But the joy of that moment was inseparable from our distress at poor Benedict's situation.

We looked up the problem section in our pregnancy book, we talked and we cried.  We had been told that his condition was inoperable: did that mean he would be disabled - or was he not going to be able to live?  We needed to be told in simple unambiguous terms.

When we went in to the hospital the following day, both Alexa and I were distressed.  Alexa began explaining that we would be very reluctant to consider having a termination since that was a decision that would be very difficult for us to take.  I asked Fiona, our consultant, to be as unequivocal as possible in the information she gave to us.  We asked her to be clear and specific about Benedict's survival chances.

How our consultant helped

In response to our questions she responded directly:  she believed Benedict had a very rare disorder know as body stalk defect; all his major abdominal organs were outside his body; and she was 99% sure he could not survive.

She went on to recommend involving a second obstetrician and a paediatrician to answer the many other questions that we now had.

From this point we began to appreciate how exceptionally well Fiona handled things.  There were so many things she did that we found helpful over the period leading up to our taking a decision, and afterwards.

She started each of our meetings by asking how we were feeling and how our thoughts were developing.  That enquiry wasn't just addressed to Alexa.  Fiona wanted to know how I was doing too.  That was very helpful to us both.

Fiona listened to us very carefully, checked our understanding of what she'd said and sought feedback.  We knew she'd understood us because she reflected back what we'd said, and that was helpful.

We know this must have been very difficult for her, but she gave us time for these discussions that didn't feel pressured, and always somewhere quiet and private.  She told us at the end when we would next meet and always invited us to ring her if we wanted.  In this way Fiona kept communication channels open and made herself accessible.

She was extremely responsive to our needs in many ways: in the way she provided information, for example, by arranging for the other two consultants to speak to us first hand; in the way she sensitively arranged for us to go down and look at the delivery room; by writing to us afterwards, with a copy to the GP, summarising all the discussion and provided feedback on issues we'd raised.

In all of this she was not judgemental.  She ensured we had all the medical facts we thought we needed, and she provided them to us very thoughtfully and sensitively.

I imagine that other couples faced with the same situation may have different needs, and the questions that different people would ask vary enormously.  How could Fiona have known what was right for us unless she had listened to us so carefully?

A complex decision for us - many factors to consider

Deciding what to do was very complex and difficult for us.  I worked away and we had no family in the area.  We had three other small children to care for and were not aware if there might have been other support available.  We both found the prospect of cutting short our baby's life extremely difficult to consider.  Looking back it would have been helpful to explore some of these broader issues with someone.

So after many questions and a lot of very painful thinking we decided to end Benedict's pregnancy.  Following through that decision was very difficult.  Each step we had to take in the process was agonising because we knew that it was the beginning of the end of his short life.

Concern for your Partner

Of course I was anxious for Alexa as well as our baby.  Within an hour of facing my dead son, I discovered Alexa's bed awash with her blood.  She was rushed to theatre after I raised the alarm.  I think the porters didn't know what to do as I cried in the lift.  Back in the room I cried alone - no one came to see if I was all right.

For weeks afterwards I was haunted by recurring nightmares that woke me in a terrified state.

The Words People Use

The words that people use and the way things are said make such an impression.  Not only to the way you feel but also how easy it is to talk about what has happened.  In hospital, Alexa told me how important it was to her that staff involved with us understood how we felt about Benedict.  But as each midwife popped her head around the door and asked if Alexa was all right, rather than inviting a response, standing at the door only suggested reluctance on their part to listen.  In the same way, Colette's teacher had told Colette that if she wanted to talk to her at any time, she could.  To the eight‑year-old child who couldn't sleep at night and struggled to concentrate in class since her brother's death, this was a responsibility she couldn't shoulder.  She would never take that step and ask.  The teacher may have shown a listening ear, but to Colette her door was firmly closed.

Perhaps it's easy to forget as a busy health professional how raw and vulnerable you feel when your baby has died.  During the night of her blood transfusion, Alexa's arm became inflamed and intensely painful.  Eventually Alexa insisted that she see a doctor to which the nurse said, "Well she's sleeping.  I'll ring her but she wont like it!"  And she was right about the doctor - it was clear that she didn't like it.  Had it slipped their minds that Alexa had just lost a baby or was it that, as a termination, he didn't count?

This contrasted markedly with a second midwife who said to Alexa, "Here's the bell.  Ring any time - if you want to chat or have someone sit with you.  We're interested in caring for you as a person not just your medical needs."  Those words meant so much.

At home, with our three girls, devastated and at a loss, we waited for the midwife to phone - she'd left a message to that effect while Alexa was in hospital.  We heard nothing.  No call, no visit.  Perhaps a GP from the surgery would drop round - they're less than 200 hundred yards away.  We heard nothing from them either.  Then Alexa took a call from the Health Visitor, "Hello Alexa, I believe you're home from hospital having had a termination for abnormality."  Nobody in the Community Service, except the Health Visitor, had made contact, let alone said they were sorry that we'd lost a baby.  Nobody had asked us how we felt.  Was this affirmation that Benedict didn't count?  If the professionals had it right, then why did we hurt so much?  But then I asked myself - who cared?

Some weeks later Alexa visited the GP again.  He asked her if she had been offered any counselling.  In response to her "No" he said, "Well it's better if you can do it on your own."  Alexa was left feeling that this suggested that to want to take up counselling would be tantamount to failure as an individual, rather than a positive and constructive opportunity.

The Value of our Child

It is clear from what people say that they do make judgements: whether based on age, weight or the fact that we had a termination.  Two examples included:

The day before Benedict's funeral the undertaker brought his tiny coffin back for one night.  He stood at the door and said "I've brought baby Benedict home."  That made a lasting impression too, because at the end of the day, that's what he was - our baby.

"To know the value of each child
Lay down your tools of measurement.
No matter the figures
They shall not add up
They shall not provide the answer.

"If love transcends all else
Tell me now
The value of each child?"

Extracts from "Weight in pounds" taken from Alexa's book of poetry, "Benedict: a child of mine"

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