On the 18th July 2000, our fourth child, Anouk, was born. Thirteen hours later she died. Today, I will try to write down what we lived through with her.
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. Other than the fibroma, all was well. Everything but the head was able to be examined by the gynecologist, but I knew they could do that at the CHUV, so I was not worried.
Two weeks later I met the ultrasonic specialist Dr. Vial. 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."
He is convinced of his diagnosis and there is no hope for recovery. "And now?" He explains that I can still abort if I wish to. "No, there is no question of it." Although I cannot understand the consequences of these words, I am sure that I cannot decide on life or death, but only God can. Moreover, He is almighty and can work miracles whenever He wants. Hearing my determined answer, the doctor says, "It is up to you to decide." The rest of the pregnancy and the childbirth should be OK. An overproduction of amniotic liquid could be the only problem, but controlling and stopping it is easy. Do I have other questions? I do not know what is happening to me, if I really am living this situation or if it is simply a nightmare. How can I ask a question in this moment? The doctor also says that I can give him a call anytime and I can do the remaining checkups in his practice as well.
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 the baby. That is why we decide at once not to ask God the reasons of this situation, He will possibly never answer us and we do not want to grow bitter.
Our eldest daughter, Anais quickly understands that something is wrong. I try to explain to my children that this baby is going to die right after her birth. "Let us pray and Jesus will cure it." Indeed, that is what we usually teach them to do but in this case I am not sure that Jesus wants to do it.
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 an anencephalic child cannot live. 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 shake 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. However, we do not pray for healing, since neither they nor we feel that it is the right direction to follow.
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 of receiving 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 ( www.asfhelp.com ). 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. Pointing out daily biblical passages, which deeply touch me, gives me courage and helps me concretely. One morning I read the following verse:
"For the perishable must clothe itself with the imperishable, and the mortal with immortality. When the perishable has been clothed with the perishable, and the mortal with immortality, then the saying that is written will come true: "Death has been swallowed up in victory." "Where, O death is your victory? Where, O death is your sting?" The sting of death is sin and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." (I Corinthians 15: 53-57)
These words help me to find hope and strength. Because I believe these words, I will be able to face the following months confidently. It is not the expectation of a miracle which helps me to endure everything, but the assurance of the baby's resurrection and eternal life. What are eighty years of life (if she would live as long as an average person) compared to eternity?
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. It seemed as if the doctor did not listen to me at all. He only wants to give his own opinion and does not want to admit that we have already made up our minds to keep our child. To him "normal people" cannot think like this. I decide that this will be my last visit. I will definitely go to Dr. Vial who is trustworthy and who fully accepts our decision
We chose Anouk 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 am well. I have accepted Anouk's death and it does not frighten me anymore. I know that He is able to heal her, but I do not think He wants to do it . People around us try to encourage us with testimonies of other babies' healing and although I take these facts for granted these leave me cold. "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.
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. They refer to a book called Immanuel, the Story of an Anencephalic Child in which I can find a chapter written by Pastor Markus Rahm. He refers to ‘human dignity', a feeling I have always had inside me.
He writes: "Human beings are distinguished in different ways such as height, intelligence, performance and life duration. Yet, many typical human qualities are shared with animals: walking vertically, the use of tools and even language. Many adult animals are superior to children and human infants. However, infants are human beings in the same way as adults. The human status does not increase or decrease throughout life. A person in a coma or in a vegetative state is no less a human being than a healthy person. And an elderly person is as human as a baby is. To be a "human being" is the same throughout life. But when does this start? At childbirth? It is certainly an important stage of life, but after a close reading we see that it is not human nature which is changing but its environment. There is only one possible answer: every individual is human from the beginning. If the human condition is the same after childbirth, it must be the same before. The human being does not develop towards being human, but as a human being. This development lasts from conception until death."
Dr. Vial 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. Dr. Vial 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?
"The Lord Almighty is the one you are to regard as holy, he is the one you are to fear, he is the one you are to dread." Isaiah 8:13.
After reading this passage, 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. Suddenly, it seems to me that I understand Jesus being discouraged and frightened at Gethsemany. Yet, God is here and although he does not always allow us to avoid trials but He helps us to get through them.
"Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding will guard your hearts and your minds in Christ Jesus." (Philippians 4: 6-7)
The day before the due date, I ask Dr. Vial for an inducement. I have continued to hope that the childbirth would start by itself, but I cannot wait any longer: it is too hard. As we arrive at the hospital room on the 18th July, a biblical calendar welcomes us with the following verse:
"I know that it will go better with God-fearing men, who are reverent before God." (Ecclesiastes 8:12)
What a promise! 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. They look at Anouk full of curiosity, ask many questions, but none of them want to hold her. She looks so strange with her purple skin. 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. Without witnessing God, everyone can feel his presence. He guided everything perfectly.
After our parents' visit, I remain 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 and it is not necessary having a brain for that. 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. The room is so quiet and I am so happy that Anouk is alive, but I must confess that I will be soothed when she dies. She certainly cannot live.
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 am holding an empty envelope in my hands. 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.
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. Later, I will always be able to throw them away, but this is my only opportunity to gather them. After that, nothing keeps us at the hospital and our children need us at home. We know that we cannot do anything else for Anouk. I cry while leaving the hospital. I keep crying in the car and once at home, when Tabea asks us where Anouk is I start again. I spend the rest of the day in bed with a box of tissues. But in spite of this, I cannot stop thanking God. There is neither bitterness nor lamentation and I do not regret for one second the last months. I am glad despite my sadness because "Death has been swallowed up in victory." "Where, O death is your victory? Where, O death is your sting?" The sting of death is sin and the power of sin is the law. But thanks be to God! He gives us the victory through our Lord Jesus Christ." Now I can understand the meaning of the following sentence a lady wrote to me during my pregnancy "Living love will never be a problem, but what we remove from it."
We gave all our love to Anouk and now we can let her go.
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-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.