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Midwifes about anencephaly


One midewife's story about anencephaly

Ira, the story of a baby with anencephaly, told by his midwife

Providing support as a midwife

Working in respect as a midwife


Providing support as a midwife

What does it mean to me, as a midwife, provide support for this family?

I think that my very first reaction was compassion.

Because we cannot be unaffected by such news, and I believe that we, as professionals, can "mourn with those who mourn."

Then there was the search for information.

During my studies, I learned that an anencephalic baby was non-viable, therefore the pregnancy was to be terminated when it was discovered by ultrasound. That was the way it was diagnosed and treated; fortunately this is no longer practiced. In my research in the medical literature and on the internet, I always found the same information: the diagnostics stopped with the ultrasound. Nevertheless, I had heard of an American family who had not terminated the pregnancy. I continued to search and I found a site for parents of anencephalic children that bore testimony to the short lives of their children.

Therefore a choice was possible. With realistic information, we should assist parents in making their choices by helping them weigh the pros and cons of continuing the pregnancy. This situation doesn't only concern medical issues, but also each individual's personal philosophy of life, his ethos. It's therefore also important for parents that we are able to listen to that aspect, and not put ourselves in their shoes with our own values. This situation has repercussions on all members of the family, so it's important to bear in mind each individual's limits.

Preparation for birth will focus more on the feelings of each family member, even members of the extended family, as well as on their interactions. It also seemed important to me to respect each person's particular rhythm in the process of learning to accept this situation and of mourning. The preparation for birth that is the same for any family. And it's essential to prepare, because this woman who is pregnant and awaiting her child has the same questions for her other pregnancies, as well as the same need to share in a sense of normality with other pregnant women.

It's important however to broach the topic of the malformation of their child at the right moment, as well as to how to handle it and the details surrounding the grieving. I think it's important to foresee these details in advance, because in the spur of the moment, the chain of events occur in rapid succession and the hours surrounding birth fly by very fast and are very intense emotionally.

The duality of the situation, at once normal and at once particular, remains during the period of care that is given, both during the delivery and after. For each circumstance, we have to inform parents in the most accurate way possible and let them make the choices. Is it better to induce labor or to wait? If the milk starts to well up after death and weaning, should medication be given or should it be accepted as a sign of normality? I think it's important that each family has time to find their own answer, as each family has their own resources.

It's therefore important, even if the baby has died, to provide the same care to these mothers, even if they leave the hospital shortly and they do not have any other major medical problems. And the post-partum period lasts until the time the family can once again look to the future.

Corinne Meyer, midwife

Vuillens Switzerland



Working in respect as a midwife

It was during the course of my job as midwife in the maternity ward of the CHUV that I overheard talk about the Jaquier’s family situation. The couple wanted to bring the pregnancy of their anencephalic baby to term. Their doctor informed the medical personnel in the delivery room of this in respectful terms.

In the charter of hospices, we can read of the rights and the responsibilities of collaborators. "They have the responsibility of respecting the ethical and deontological rules, of practising mutual respect and co-operation…" Also of the patient: " they have the right to receive appropriate care that respects their person, their moral, cultural and spiritual values, and to contribute to their own treatment."

In an age when the "social norm" is to terminate a pregnancy after a serious condition is discovered in the fetus, the couple's request nevertheless was heard and respected. The event was conducted in the spirit of the values promoted in the hospices charter.

Mrs. Jaquier was induced on her due date, as she requested. It is rare for an anencephalic baby to provoke labour spontaneously. It seems that the fetus participates in inducing labour through his gland and his suprarenals, as the prolonged gestation of anencephalic babies tends to prove, as these glands tend to be atrophied in them." (Précis d’obstétrique, R. Merger, J. Lévy, J. Melchior, Mosson, 1985) Labour quickly began and we received Mrs. Jaquier in the delivery room in the afternoon while she was dilated 7 centimetres. She gave us bonnets of various sizes to put on her baby before she was to hold her. She gave birth to her baby in the presence of two midwives and two doctors in an atmosphere of intensity and of "religious" calm. I put the baby on the reanimation cart to dry him out and to put on his little bonnet. She breathed spontaneously. I was able to quickly give her to her mother.

The welcome this child received impressed me. She was looked on as a new being to discover, even though her parents knew she was going to die.

I propose a few hypotheses to explain this reception:

  • Since this baby was brought to term, she was more "attractive" than a premature baby, in spite of her handicap. I once saw an anencephalic baby at 32 weeks, and he impressed me quite a bit.
  • The waiting period between the diagnosis and birth permitted the couple to begin the mourning process. When their child was born, they were able to welcome him, not in a state of mourning, but in a state beyond mourning, more in a state of acceptance.
  • "Attributing human value to one's child is generally a natural process, immediate and more often than not anterior to birth (during pregnancy and even before conception). This process is challenged and questioned when a handicap is diagnosed. This humanisation is a function of the mental representation of the handicap, the degree of desire for the child, the baby's actual abilities, and the parent's history of trauma." (L’afrée, issue number. 6 "handicap, médecine, éthique" December 1993). In this situation, the child was wanted, so the parents' conception of the handicap was positive and did not lead to rejection or exclusion, but rather acceptance. The child breathed spontaneously and allowed her mother in particular to see him alive and to pass a few hours with her. She looked at her intensely and tried to find resemblance with the baby's brothers and sisters (and there were many!).
  • Mothers have a different outlook on their child that is different than that of a stranger because they have a more intimate knowledge of their baby. They feel the baby move; they talk to him; they can't forget him because he takes up space in their bellies. In that case, Mrs. Jaquier's look, full of unconditional love, was quite striking.
  • Mrs. Jaquier was awaiting her fourth child, and therefore her maternal instinct had time to develop. She knew how she wanted to welcome the baby, and she was able to have an experience that lived up to her expectations.

After a few moments, the brothers and sisters came to see the baby. Their father went to get them in the waiting room to bring them to their mother. There was some apprehension on their part, especially with the oldest, but they will never forget the way their parents welcomed their baby. This experience will contribute to the development of how their perception of a handicap. The sight of their handicapped sister will allow them to absorb this event, instead of experiencing it in a climate of mystery and unspoken ideas that are mentally de-stabilising and lead to fantasies.

"The body is the centre of reality. To see the body is to put a face on the loss. It's contextualizing it in a story. The body that has not been seen leaves a vague impression." (profil femme, p.29 (issue and date unknown)).

Several photos were taken of the baby, alone and with the family. These will allow each family member to have a tangible memento.

Mrs. Jaquier kept the baby in her arms almost the whole time she was in the delivery room. After two hours, she and her baby were placed in a room on the same floor, and it was there a few hours later in the wee hours of the night that this little girl died next to her mother.

For the delivery team, this sad and pathetic situation was an intense but peaceful experience because it was lived according to the feelings and convictions of a family open to welcoming someone different than themselves.

Anne Michaud, midwife

Epalinges, Switzerland



Last updated Mai 1, 2019