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Anna and Tess

Anna, baby with anencephaly

24th April 1997

In October 1996 I became pregnant. And when we got our first ultrasound it showed that we were going to have twins. We were so happy, so lucky, when we saw two little hearts beating.

I had a pregnancy without complications, except for the morning-sickness, there were no actual problems. The routine-checkups in hospital gave no problems too, almost every time we could see our unborn children with the ultra-sound and the heartbeats of the children were music to our ears. I noticed that the heartbeats differed from each-other and thought maybe it's a boy and a girl.
At home we could watch the ultrasound-pictures on video for hours and we started to decorate the nursery-room and things we had to buy we bought twice with a proud smile on our faces.

In the 24th week of my pregnancy we went to hospital for another routine-check-up, it had been a while since we've seen our unborn-children, but I felt good, both children were alive and kicking, especially the baby at my left side . Sometimes so strong that it woke me from my sleep. It had also been a while since my husband went with me to hospital but this time we went together...

The doctor was busy with the ultra-sound and with tears in our eyes we watched the baby at the right side, not knowing then that our tears of happiness would soon turn into tears of deepest sadness... When the doctor checked the left baby, I almost immediately felt that there was something wrong. I asked the doctor what she was looking at, and she said she could not see the babies head properly. She made some prints and after almost half an hour she said: "you may go to the waiting room again, I will call you in a minute." From that moment on I knew that something was terribly wrong and I felt sick and worried. After half an hour of waiting, which seemed hours, the doctor told us that we were expected at another hospital the next day for another ultrasound. We asked her what was wrong, what she had seen, but because she was not sure, she could not give us much information. The only thing she said was : " I hope I am wrong, but it could be that one of your babies has a malformation, but as I am not sure I don't want to worry you too much now. Tomorrow you will be certain. " But we were worried, a lot, and we were afraid, what was wrong with our child?? What could it be??

That night we hardly slept and we arrived much too early at the hospital the next morning. And then the ultrasound was being made, first the baby at the right, then the baby at the left and then everything went silent... I only watched the doctor's eyes and they told me it was very wrong, very serious and I was right, our baby had a malformation, incompatible with life, anencephaly, a neural tube defect, she would certainly die, either before of not soon after birth.

We were stunned, our world was falling apart, all hope disappeared, our baby growing inside of me would die and there was nothing and then again nothing we could do about it...

Within an hour we stood outside and I don't know for how long we cried and cried, together, helplessly. We went home and then the phonecalls came. I could not speak to anyone and my husband had to tell our family and friends the bad news, crying. My parents came to us immediately and later on some friends.

We could only cry and tell the news over and over again. That night I tried to get some sleep but I could only cry. So many thoughts, so much pain. I felt sorry for my unborn children and I felt sorry for myself and my husband. And my unborn children were kicking and moving under my heart.

The next day I called the doctor again, we had so many questions. He really took the time to answer our questions and we made new appointments, but the truth was hard, there was nothing to be done, our baby was going to die. At the next appointment I asked the doctor for our babies sex, we wanted to know now and he said they were girls, two little girls. From that moment on we gave them their names, Anna and Tess. Anna was our sick baby and Tess seemed all-right.

We learned much about anencephaly, things we did not know before, but we still feared the future for both of our unborn children. We experienced sadness, grieve, helplessness, but also happiness and hope. I tried to be honest to myself and to my unborn daughters, I spoke to them and tried to prepare myself and my daughters for what was going to happen. I told Anna I was very happy with her and very sad she could not stay with us. I told my daughters to enjoy each-other's company as long as they were together, because they had to say goodbye after birth, or maybe before birth... I told Tess to be strong and brave and that it would be difficult for her too. I tried to teach my unborn children the colors, sounds and music through my own senses, while Anna was still alive. I needed to do this, because I was certain Anna would never enter the world she was supposed to be born in...

With 37 weeks I would get a section, I asked for a section myself, because Anna almost certainly would be the first-born, since she was so tiny and weak I feared for Tessĺ life too. The weeks before were very difficult, they were weeks of bitter sadness, weeks of hope and happiness, and also weeks of loneliness. It became clear that most of the people around us were unable to deal with our sadness and pain. And we understood, because we hardly could deal with the situation. I remember the day after the fatal ultra-sound when I was called by the babyshop, announcing that the babybeds could be obtained. I told the woman, that we had to cancel one of the babybeds and she said: well madam, that's not possible, you ordered two beds!! I could not explain the situation, as I was so stunned. I told my husband crying what happened and he called the lady back and explained the situation. When I walked through our village I saw people frighten, nobody asked me how I was doing, but on the other hand strange people smiled upon me and sometimes felt my belly, not knowing the sad facts.

The nursery we planned for our twins, became a nursery for one baby, this was very difficult to do, because my two daughters were growing under my heart. Every night I thought about the future, about the birth announcement, the funeral, I thought about these things for hours.

Fortunately we were helped by a social worker. She helped me a lot, I could tell her my hopes and fears, I could laugh and cry, and she and our doctor really stood beside us, for which I am very thankful.

We talked about organ donation with our doctor, if Anna was not supposed to live, maybe she could help other sick babies by being a donor. Then Anna's life could bring more purpose than it already did. Our doctor took our request very seriously, but in the end we were told that Anna was not allowed to be a donor. Discussions of anencephalic babies being a donor are still going on, but Anna was also born premature.

In the 32nd week of my pregnancy I was suddenly hospitalized, during a doctor's visit the contractions started and I had to take immediate rest and was put on the medicine Prepar to try and stop the contractions, I was also injected with a medicine for the babies lungs. For 48 hours I lay in bed, my body shaking and my heart beating because of the prepar. For 48 hours the contractions had stopped but then they started again. When the doctor came to see me I already deleted 9 cm. In a hurry I was taken to the operation-room, the moment of truth was there, it was the night of the 24th of April 1997. And while I was getting anesthetics I encouraged my children to be strong and brave... I was helpless, and had to wait till I had recovered. I also said goodbye to Anna, not knowing whether she would be born alive or born still, this was a very difficult situation...

It was very striking that our own doctors were on duty that night, and I was very grateful for that coincidence. We knew each-other and we had shared the pain and sadness of Anna together, and now we were together to give birth to the children...

It was half past 4 in the morning and Anna and Tess were born at 4.43 and 4.44. At 6 o'clock I woke up a little, my husband was sitting beside my bed and he said, we've got two beautiful daughter's, Anna is still alive and Tess is doing okay. I felt miserable, empty, almost as if I had been robbed from my babies and I had not even seen them. Anna, our firstborn, only 1250 g, Tess our second daughter only 1850 g. I fell asleep again, due to the anesthetics and I was tired, and afraid of what would come...

At half past 7 I woke up again and I was shown Polaroid-photo's of my daughters, and indeed they were beautiful. At first I was afraid to look at Anna, because I did not know what to expect, but she was beautiful.

At 8 o'clock the doctor came in and told us that Anna had passed away, very peacefully...

She only lived for 4 hours, but did not suffer. My husband was there all the time, he held her in his arms, while I was still recovering from the section. To my sadness, I have not seen Anna while she was alive. I had to say goodbye when she already had passed...

I'll never forget my little daughter Anna, she looked so tiny, so peaceful, so sweet, so beautiful. It was a time of pure happiness and pure sadness, tears of joy and tears of deepest grief...

After 5 days my husband and I buried Anna. We wanted to do this together, I myself had arranged the flowers, nice roses, for our little rosebud. Anna's funeral was sober, plain, quiet and sad, but it felt good. My husband and I had carried this together and together we wanted to pay our last respect to our daughter. I had never seen such a small coffin and it broke my heart. We put the roses and Anna's teddytoys on the tiny coffin and stood there crying while the clouds were crying with us, saying our last goodbyes to our Anna...

When we came back to the hospital after the funeral we immediately went to our daughter Tess to hold her close and to share our grief. After another 5 days I was send home while Tess had to stay in hospital, she was small and needed a lot of care, but doing very well and in good hands...

Anna will always be part of our life, she will always be with us in our hearts.

Tess is 4 years old now and a lovely child with a heart of gold.

And I, I am proud to be the mother of my two girls and I believe that some day we will meet again...

 

Last updated 11 October 2007