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My story with beloved Carmen Arviansyah


Carmen Arviansyah, baby with anencephaly

27.11.08 – 01.12.08

It was on Friday, 29.08.08 when my "world" fall apart...
I was in my 30th week of my pregnancy, when I actually asked for another Ultrasound. All my previous check-ups at the doctor and midwife were always fine, everything was "normal" my blood pressure, the heartbeat of the baby, the size of my pregnancy, the weight of myself and even the ultrasound I had with 14 weeks was stated normal, the doctor even had measured the size of the head of the baby. Despite all the confirmations I instinctively felt something was wrong and since I have had 2 children (2 healthy normal pregnancies), I found it strange that I couldn't feel the baby's head pressuring on my bladder.

A week before the ultrasound, the midwife also made a comment, that she couldn't find the head. Instead of keep worrying, I decided to ask for another ultrasound at my next doctor's visit. The father of my baby already had another appointment and I was glad about that, cause I was ashamed of my doubts and didn't want to tell him, that I was going to get another ultrasound.

I told the doctor, I only wanted to know if everything was fine, I didn't want to know the gender. He started to explain joyful... here is it's but, the legs, the spine, the arms....but then his face started getting serious and he was quiet for a long time. I sensed something was wrong. Eventually he said the head seems to be too small, but to be sure, I should go to the hospital to get a 4 D ultrasound.

Arriving at the hospital at around 22:00 h I was surprised that the nurses called the specialist for the ultrasound, apparently the note I had brought to them, made it serious enough to disturb the doctor at this late hour, the note said "suspect anencephaly" which I had no idea what that meant.

The doctor arrived about 30 minutes later, which made me even more worried. Usually the doctors in Indonesia take their time... like nothing is a real emergency for them. I was all alone and now I wish I had my husband to hold my shaking body. They put a lot of that freezing gel on my stomach and started to roll the scanner. The doctor seemed very busy looking at the screen of his computer, I didn't dare to even take a glimpse, I was so terrified and crying already, since I could tell that there was something wrong.

Never in my life, was I so scared.

The doctor made some comments in between, saying "it" looked like a frog!! When he was finished with me, I ran to the toilet first and had diarrhea straight away. Coming back to pick up the results, the doctor explained that the baby definitely had anencephaly and that it had no chance to survive once outside of my womb, he recommended to "remove" "it" straight away....

Never in my life was I so shocked and felt so hopeless. I felt like I wanted to hide in the deepest part of a dark cave, I couldn't bear people looking at me. Up till then I had been so proud of my big belly, now I feel ashamed of it.

I stayed home in my room staring into the emptiness and avoided going anywhere unless I had to, the word "anencephaly" is haunting me day and night, I open up everything about it in the internet, some have so shocking pictures even on the first page, that my heart races and immediately I shut it off. Some websites with stories about families who had gone through this helped me a lot, I read every single story.

Despite my condition, I did continue working.

The first week after I had received this news, I was truly afraid that I would lose my mind. The second week I started to heal my wounded soul and began to gain back my strength, specially after my husband and I had decided not to terminate the pregnancy. If the baby's life is only in my womb, then I certainly will not take that away from her/him and we will love the baby as much as possible whilst still moving around in my womb.

Carmen Arviansyah, baby with anencephaly

Some days later I had a dream of the baby and I woke up and said her name "Carmen". She (although I still don't know whether it's a girl or a boy) wants to be called Carmen, meaning song in Spanish and garden in Hebrew... so garden full of songs, sounds like heaven to me...

Thanks to a very kind and understanding midwife, Catherine from Australia, and my loving husband, I am able to go through this journey.

A book written by a Buddhist nun called "When things fall apart" is helping me at the moment to overcome the pain and suffering: "The first noble truth of the Buddha is that when we feel suffering, it doesn't mean that something is wrong. Suffering is part of life, and we don't have to feel it's happening because we personally made the wrong move, In reality, however, when we feel suffering, we think that something is wrong. Hope and fear is a feeling with two sides. As long as there is one, there is always the other." In other words, as long as you keep holding on to "hope" the pain will not go away. It is wiser to accept and acknowledge the suffering just as ordinary as pleasure or happiness. It is indeed easier to get along with the problem like this, rather than looking for a "way out".

Some more phrases that helped me: "Impermanence is the goodness of reality. Unfortunately we regard it as pain, we try to resist it by making things last – forever. Our suffering is based so much on our fear of impermanence. Who ever got the idea that we could have pleasure without pain? Pain and pleasure go together; they are inseparable. They are ordinary. Birth is painful and delightful. Death is painful and delightful. Everything that ends is also the beginning of something else. Pain is not a punishment; pleasure is not a reward"

There are many more wise words in this book, I just wrote down these two phrases incase they could help someone else experiencing what I am going through at the same time...

My homebirth with Carmen Arviansyah

Carmen Arviansyah, baby with anencephaly

11.11.2008 my due date has passed, from now on, I would try all kinds of natural remedies to induce the labor. Starting with homeopathic and herbal remedies and acupuncture, few days later I started taking castor oil, first a teaspoon and then every day increasing the dose. The castor oil gave me cramps but only to run to the toilet with diarrhea and that for about 5 days. I stopped taking castor oil to gain back my strength after so much diarrhea. My midwife suggested to take a break and next week to try castor oil again but a half a glass at once. I didn't really agree with this idea, imagining how horrible it would be to be in labor while having diarrhea. We tried a Chinese herbal remedy and routine acupuncture plugged on to electricity... but nothing seemed to work.

By the 24.11.08 in my 42nd week we decided to try "modern" medication, a pill called Cytotec. My midwives Catherine and Candra already slept over, she didn't want to leave me alone, who knows how fast I react to this pill. Started to take it on 25.11.08 morning at 5 a.m.. By 9 a.m. the next dose, by 1 p.m. still no contractions at all, we raised the dose from a ¼ to ½ pill every 4 hours. In the afternoon at about 4 p.m. my belly started to get hard and by night time I had contractions about every 5 minutes, still bearable but painful enough to bother my sleep.

Next day 26.11.08 the contractions were getting little stronger and still like every 5 minutes. It was Andrew's (father of Carmen) birthday and we had a small celebration at home. By night the contractions got strong and we prepared for labor. Andrew pumped a baby pool and filled it with hot water. I got in the water and the hot water relieved the pain so I could rest for a while. After about 15 minutes the contractions started to come back. Sometime I got out of the water and later in again.

By 24:00 h my water broke, when I was in the pool. I was so glad that finally, after 30 hours of contractions, something is happening and I though that after the water broke, it will not take all that long anymore. I was wrong, for some reason the contractions became weaker. I decided to get out of the water again, that maybe the "light" baby will give more gravity when I am out of the water. I would however recommend a waterbirth for anybody having a normal baby!

Out of the water keeping on with contractions but they were not getting stronger. About 03:30 h I started to worry, cause the contractions were actually getting less and more intervals in between. We called a friend to have a car ready at my house incase we do have to go to hospital. Midwife Catherine examined me and mentioned I was fully dilated, but even so, she also was a little worried about the contractions getting less.

At 04:00 h we decided to take another pill (Cytotec) and by 04:20 h Carmen Arviansyah was born on a blanket on the floor... me in the position squatting, midwife Catherine caught the baby from the back and checked his heartbeat by holding the cord, she said we're losing him, there is almost no heartbeat. Midwife Candra had this homoeopathic remedy called Carbo veg. and told me and Andrew to rub his chest with it. In no time the heartbeat was back and Carmen gasped a breath and made the most touching sounds.

When 7 months pregnant and about a week after the diagnosis, I had a dream that my baby's name is Carmen. However, it turned out that Carmen is a boy... and was now moving around and making more noises and his mouth already sucking looking for my breast. Still on the floor, Candra brought some pillows to make me comfortable, I now could breastfeed Carmen while waiting for the placenta to come.

Carmen Arviansyah, baby with anencephaly

For the last 2 months, I was a little worried, whether I would be shocked to look at the baby's deformity, but as soon as Carmen was there and you hear his beautiful voice, all of those worries vanish immediately. You fall in love instantly and your child is the most beautiful baby. The wound on his head does not bother me at all to love my baby. I wanted to share this specially to those mums who are still expecting and may have the same worry. I assure you, you do not need to worry at all about what he/she may look like, you will fall in love and this love makes your baby most beautiful no matter what.

About 20 minutes later, the placenta came, my midwife mentioned during her last 20 years as a midwife, she had never seen a stranger placenta. It had the shape of a heart and the cord was attached at the side of the placenta.

Ibu Robin, midwife leading the foundation where midwife Catherine and Candra are working at, is doing a research about the effects on the baby, when leaving the cord attached to the placenta for some time. She mentioned in many areas in the Polynesian islands they have a custom to leave the cord on for many hours while the placenta is given all kinds of herbs. We gave our placenta flowers and left the cord on for about 7 hours. The midwife says, this could have been the reason Carmen lived so long and was so strong, due to the extra energy gained by not cutting the cord at once.

Again to all mums still carrying your beloved child, try to convince your doctor or midwife to leave the cord attached to the placenta for some hours. The baby goes through a lot of stress during birth, let the baby rest while still having the "security" plugged on to the placenta. The separation from the placenta is another stress to the baby, so let him/her get over the birth stress first and let him/her gain some strength before unplugging him/her from the placenta... makes sense?

Carmen's reflexes were just like a normal baby for the first 2 days: breastfeeding, grabbing my finger, moving around, he had stool and peed, only he never opened his eyes. We stayed at home at his side 24 hours a day, kissing him all the time, taking pictures and just fully be there for him.

It was on the 3rd day, he already started to get weaker, his arms were mostly hanging, he still held my finger but he was too weak to breastfeed. I pumped my milk and gave it to him with a little medicine pipe.

4th day the same, even having difficulties to swallow.

On the 5th day, early morning at 05:00 h he started to breath difficult and he groaned. I held him firmly in my arms, with my naked breast as his pillow to go through his last 2 hours before his soul gets separated from his body. I kept praying and begged god to not make this transition painful. It seemed like quite a torture, I almost couldn't stand looking at this process. I always thought, they would just get weaker and just stop breathing and die peacefully? It wasn't like that with Carmen, he groaned and sometimes moved convulsively. At his last breath he had a tear coming out of one of his eyes!

Carmen I miss you so much... what an unbearable pain. My breasts are full of milk and no baby and every time I just imagine his face, which is like always, the milk flows even more. My hands are fiddling around nervously not knowing what to do... they should be busy taking care of a baby, changing diapers etc. ... what a great loss.

Even we know in advance, that our babies will leave us, no matter how prepared we are with that fact, it still is the hardest thing ever in life I've been through. It's simply against nature to have to bury your child. Carmen I miss you so much... !!!!!!


Ulrike made a site about anencephaly in Indonesian



Last updated April 2, 2019