Anouk Jaquier

My Daughter Anouk

Monika tells us of her daughter Anouk who was diagnosed with anencephaly while in the womb. Anouk lived for 13 hours after birth

I held you in my tummy, in my heart and in my arms

On the 18th July 2000, our fourth child, Anouk, was born. Thirteen hours later she died.

Everything was normal until the 20th week of the pregnancy, but by the time of the main scan, the gynecologist noticed a fibroma on my uterus, which could be dangerous during the delivery. Because he was not sure, he sent me to a specialist at the CHUV hospital.

Two weeks later I met the ultrasonic specialist. Although he did not mention a fibroma, the examination was longer than usual. "I am seriously worried about the head," he said. "Your child suffers from a very serious malformation called anencephaly. This means that the cranial bone and the skin are missing. The amniotic liquid has damaged the brain and instead the cellular tissue is uncovered. Such a child cannot live, and consequently it will die shortly after its birth."

Diagnosis in the womb

He explained that I can still abort if I wish to. "No, there is no question of it," I said. Hearing my determined answer, the doctor said, "It is up to you to decide” and told me that rest of the pregnancy and the childbirth should be OK.

Once back at home, I could fully cry in my husband, Christophe's arms. First, he is soothed that there is nothing wrong with me, because, unlike me, he was worried about my own health. At the same time, this news is also a shock and there is no doubt for him too; we have to keep our baby.

In the evening, I phoned one of my uncles who is a doctor to get a further explanation. He cannot give me more details, except that a child with anencephaly will not live for long. However, he encourages me to give her the same rights as any other baby, and to live in the most normal way possible. These words move me, since one of my major questions after the diagnosis was how I could live the remaining four and a half months with a human being already condemned to death.

The following night was the worst of my life. I could not sleep and I was continuously thinking the situation over. That is why I got up very depressed in the morning to look after my children Anais (six and half years old), Max (five) and Tabea (three).

Our pastor and his wife visited us and together we prayed that God will help us and console us.

I also telephoned the midwife, and like my uncle, she urges me to continue living normally and to give this baby everything I would give to a healthy child; she has the same right to receive love and good care as any other. We should also benefit from the remaining time to prepare for the childbirth so that everything happens as we wish it to. She gave me a website address on anencephaly. I can see for the first time pictures of newborns with anencephaly and the testimonies of the affected parents. This helps me during the following days knowing that I am not alone. People have lived through the same experience, and it is not completely crazy to keep the baby. If the world cannot understand our decision, God does.

In order to give our child a name and to enjoy the remaining time in the best way possible, we wanted to know the baby’s sex. At the next checkup, the gynecologist informs me than I am expecting a little girl. We have decided that her name will be Anouk. Apart from that, the consultation goes poorly. For this doctor, my daughter wasn’t a child. She was a thing, ‘incompatible with life’. I had heard heartbeats at each appointment, I had felt movements for weeks, I had seen my tummy growing week by week. How could this doctor tell me that my baby was incompatible with life in the presence of all those signs of life?  ‘Get rid of it as soon as possible and start again with a baby that is worth it’, were his exact words.

I decide that this will be my last visit. I will definitely go to the other doctor who fully accepts our decision.

We chose Anouk as a name because we liked it. Originally we did not look for its meaning. Afterward, we found out that Anouk is a derivative of Ann, meaning "grace". Grace is something that we do not deserve, which we have done nothing to receive, but which we receive anyway. Anais, our eldest child’s name has the same root. After I had two miscarriages, she was a precious gift to us. But now is it the same gift? Yes, it certainly is, but in another way. God gave us something special and precious: His peace. Even though everything seems to be against us, I was well. I had accepted Anouk was going to die and it did not frighten me anymore.

"My grace is sufficient for you," God says to Paul as he asks Him for personal healing. I take these words for myself and I live with them. I choose to try to enjoy each moment of this pregnancy, looking forward to feeling her moving in my womb. She moves a lot! Every single sign is very precious to me and I realize how I care for her every day of her life. For instance, when I do not feel her moving for a day I ask myself, "What if she is dead?" I then feel relieved at the next kick.

In my mam's arms...

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Other Families support me by sharing their experiences

I desperately try to find other parents who have gone through the same thing, but my efforts remain unsuccessful. Anencephaly is fortunately rare and almost every woman aborts after the diagnosis. My last hope is an ad I put into a Christian newspaper for families. After two months, my patience is finally rewarded: three German families telephone me. It is good to speak with people who have lived through the same experience previously. Their stories encourage me and their experiences give me new strength.

My doctor organizes a meeting with the CHUV neonatologue. We can explain to him how we envisage our daughter’s short life. We tell him our wishes, which he fully accepts. This discussion moves me, since I suddenly realize that there are only a couple of weeks until Anouk’s birth. Afterwards, everything will become a reality. The birth of a baby with anencephaly does not usually occur naturally since the brain is missing and the responsible hormones cannot be generated. My doctor proposes a review at the 38th week of the pregnancy, because at this time the baby is fully developed and only puts on weight. At the beginning, I feel relieved to have a shorter pregnancy, but the closer the date comes, the more I would like to carry on until the last day. Most importantly, I wish that God would lead everything in his own time, so that it happens in the best way for Anouk, for me, for Christophe and the kids. The easier the childbirth occurs, the better we will enjoy our time together with Anouk. Yet, practical thoughts worry me: how will we react at the sight of the wounded head? Will Anouk be able to feed?

I understand that I don’t have to be afraid of my questions, but I can take refuge in God at any time. I listen to biblical and worship music. These words remind me of God’s nature and his promises. They help me to see Anouk with God’s eyes, which is to say, with the heart.

The last days before the birth are quite hard. Every hour is like an eternity and I can hardly think of anything other than the birth. I am so worried about it that I long to be alone on a desert island. Moreover, people around me are getting on my nerves. Although they are very nice, asking me how I am and being very kind to me. But I would like to be on my own. That is why my mood changes all the time, going from an immense joy to the deepest feelings of sorrow. Yet, I feel physically good and there is not this prenatal pain. Instead there is peace. On the spiritual level, there is a permanent struggle: I am worried and afraid of what is coming. A normal childbirth is not always pleasurable, but here, there is also the insecurity of what comes afterwards.

The day before the due date, I ask my doctor an inducement. I have continued to hope that the childbirth would start by itself, but I cannot wait any longer: it is too hard.

A Deep Peace

All my fears vanish and instead a deep peace, which will remain, settles. And God answers our prayers: Anouk is born at 5:21 pm after a normal, brief and straightforward birth. The midwife just put a little cap on her head and I can finally hold her in my arms. She is alive! Is she going to start breathing? The world around me stops and the most important thing is my daughter. Every second with her is so precious and we are so grateful. Although I clearly know that she is going to die, I am so happy. Joy fills the room around us; joy and peace. Anouk starts breathing gently: uncertainly at the beginning, but then in a more and more regular way. Now I look at her more closely. She is so tiny, especially her head. The cap I tried to knit as small as possible is still too large. I do not want to look below the cap. I try to look at the rest of her body. I see my daughter, a baby with a dreadful malformation, but my daughter first and foremost. She looks like the three others did at the birth. We could easily mistake them and Anouk as well.

And then they arrive; Anais, Max and Tabea come to meet their little sister. They are intimidated by the room with all the machines and they feel insecure because Mummy is lying in this white bed and cannot get up to welcome them. We take many pictures to help us remember her later.

"Your daughter is very lucky to be welcomed into your family," says the midwife to me. She thanks us for having let her be present at this childbirth. The pediatrician tells us how our attitude and decision impress him.

After our parents' visit, I remained alone with Anouk. She is deaf and even if she opens her rounded blue eyes, she is blind. But she can react to the love we communicate to her and her reaction is fully visible, since love is given and received with the heart. Now I am ready to have a glance under the bloodstained cap. The wound is awful but belongs to Anouk and does not shock me.

Anouk leaves us

Towards 2:00 a.m., she starts crying and she can hardly breathe. I call the pediatrician who clears her respiratory passages. Then she calms down, but breathes with increasing difficulty and more slowly than previously. Just before 6:30 a.m., Christophe and I pray together and we put her life into God's hands. She breathes once more and then dies. I do not need a doctor to know that there is no life anymore. I cry and cry, partly because I am sad but mainly because I am happy to know for certain that Anouk's soul is now with God. Christophe cries too and it does me good.

Love being in my mam's loving arms...

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Before washing and dressing Anouk, we take her footprints and hand prints, because it is important for me to keep as many souvenirs as possible. We gave all our love to Anouk and now we can let her go.

We chose to carry our daughter to term, convinced that limited time did not mean limited experience; a lesser body did not mean less value. But she did not live just a few hours. She was alive for 9 months in my womb, 13 hours in our arms, and her memory will live forever in our hearts. She was a beloved daughter, a sister, a granddaughter, a niece.
Her name was Anouk. She was worth everything. 

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ANENCEPHALY is a neural tube defect which means that the baby's skull and brain do not develop correctly in the womb. A recent study published in the British Journal of Obstetrics and Gynaecology found that 72% of babies with anencephaly lived for a short time after birth. Of those children, 25% lived up to 5 days, while up to 7% lived up to 28 days after birth.

Jacquier M, Klein A, Boltshauser E. 'Spontaneous pregnancy outcome after prenatal diagnosis of anencephaly.' British Journal of Obstetrics and Gynaecology 2006; 113:951–953

Links Monica's support organisation for parents Support organisation in the UK Carrying to Term