Not perfectly formed

“The next few weeks were spent in complete turmoil – desperately trying to find out precisely what was wrong with our unborn baby.”

The story of a couple who went through termination following an unfavourable ultrasound scan of their baby at 14 weeks. The husband, a doctor who performs scans as part of his work as a radiologist, writes about their experience, their unexpected grief reaction following the termination, and his views on the best ways that the medical profession can support people in these situations. A true story.    


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NOT PERFECTLY FORMED

Life frequently presents opportunities for learning, and personal experience is invariably a valuable source of knowledge that, if assimilated and used correctly, can change our lives for the good. As doctors, experience as patients on the other side of the consulting table, on the receiving end of the scalpel, or, as in my wife’s case, at the other end of the ultrasound probe, can hardly fail to influence our future dealings with patients, especially those with problems similar to our own.

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DEVASTATING
It was several years ago that my colleague had to tell me that the scan she had just performed on my wife, then 14 weeks pregnant, had shown a major abdominal wall defect in the baby. My wife had asked for an early scan due to her poor obstetric history. I remember this news being as devastating as any I have ever received – this was a much-wanted baby, coming after years of fertility treatment, an ectopic pregnancy and several miscarriages.

The next few weeks were spent in complete turmoil – desperately trying to find out precisely what was wrong with our unborn baby. After various test and consultations, we were eventually to be told that our baby had trisomy 18 (Edward’s syndrome), with a hopeless prognosis. My head told me there was only one logical course of action – termination. Why go through another 20 weeks of miserable pregnancy, knowing what the outcome was going to be? We had to think of our 3 year old son – why get him involved in all of this? Surely the best thing was to get it over and out of the way, so arming myself with these and other arguments I set out on the eventually successful job of convincing my wife to terminate her pregnancy. This is something I shall regret for the rest of my life.

In retrospect, I know I felt at the time that it was what we should do, and we were certainly steered readily down this path by our medical advisors, with family and friends in full agreement. Point number 1 – we were never offered an alternative course of action, or support for such. Point number 2 – we did not have the opportunity to talk to anyone who had been through the same situation.

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TERMINATION
The termination procedure was undoubtedly the most dreadful experience I have ever been through – and it was worse for my wife who never wanted to go through with it anyway. I am no stranger to distress, but this particular experience was the epitome of despair and loneliness. My wife was sequestered in a room for nigh on 34 hours, waiting for a dead and deformed baby to appear. To hear her recount even now of how the baby’s kicks got weaker as it died, and of the guilt she felt, is not pleasant.

I whisked her away for a week’s recuperation in Fiji as soon as it was over, and on our return Christmas was upon us. I mistakenly thought that this would help take her mind off what had happened, but over the next 2 months saw her sink lower and lower into the depths of withdrawal, guilt and repressed grief. I ended up by almost forcibly taking her for counselling. Point number 3 – our follow-up did not include the opportunity for grief counselling.

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GRIEF
The counselling was a slow and gradual process of healing. My wife had been completely unable to grieve naturally for her baby, feeling that this would be totally hypocritical after a termination. My own grief had started months earlier, on the day of the initial scan in fact. A significant turning point came for us both when the counsellor suggested we see a church minister and name our baby. This we did, having a very special small service of dedication for our son.

As a diagnostic radiologist, I spend quite a lot of my time doing antenatal scans. I found this part of my work particularly hard at this time. I shall never forget one mother who asked me the sex of her unborn baby. When I told her it was a boy, she said, “Oh no, not another one.”

I could have hit her!

I have for the past year or so been thinking a lot about the whys and wherefores of antenatal screening. I still cannot bring myself to scan someone who is planning a termination – nor do I see why I should. Those of us who do such scans are privileged to witness the wonderful development of the human form. We watch the babies move around, see their hearts beating, and even watch them swallowing the amniotic fluid. I have no intention of ever making such observations knowing that life is about to be willfully ended.

Last year I screened a lady, I’ll call her Pam, with an anencephalic baby. I found myself sharing with her my own experience with my son and offering support if she decided to continue with the pregnancy. She felt at the time under pressure to terminate, and no one ever suggested to her that she could continue the pregnancy – she had been made to feel that that was not appropriate. Pam, in fact, did continue, and was very pleased that she did so.

I scanned her several other times, and was able to give her many pictures of her baby. She had time to prepare for his funeral and during his 30 or so minutes of life after his birth, she was able to tell him all that she wanted to. Pam’s other child was fully involved. I would have to say that in my many years as a qualified doctor, this would have to be the most significant experience I have ever had with a patient. Since then, my wife and I have been able to offer support to other couples finding themselves in the same difficult situation. Obviously I am in a very privileged position to do so.

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ANTENATAL SCANS
Why do we do antenatal scans? I have often wondered if we are finding things people would rather not know about, and hence giving them months of anguish that they would otherwise have not had. Are we confronting them with decisions they would not, or perhaps should not, have otherwise had to make? I began to wonder if my job as a scanner was in the realms of quality control officer for the unborn, having every so often to get out the REJECT rubber stamp, consigning the parents to the next abortion clinic.

I believe I do have a positive contribution to make, however, not just in technical skills, but in compassion and empathy, as one who has had that experience. Pam has related how the scans greatly helped her, and was grateful for them. Antenatal scans of course do have positive contributions to make, particularly in the diagnosis and management of fetal growth retardation, multiple pregnancies and placental problems.

I would summarise the lessons I have learned as follows. For doctors and other health workers in this area – we need to be sensitive to the wishes of patients. Dogmatism in an area in which we have no personal experience can be inappropriate, and such personal experience has afforded me considerable enlightenment. People in such lose-lose situations are intensely distressed, and helping them reach their decisions demands great skill. We need to be aware of all the local sources of information and support that these people so desperately need, both formal and informal, and use them to the full.


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