Helene

Mom to Andreas (Lille)

Born and died April 4, 2001

Helsingborg, Sweden

I’m Helene, the proud mother of 3 boys: one with cancer, one without, and one who lives only as a memory in my heart.

On April 4th 2001, I gave birth to a little tiny baby boy, who was  far from ready for this brutal world , and who never would have been, no matter how I would have loved him and cared for him had I been given the chance.

He lives now only in my heart, in my memory of what was, and my dreams of what should have been.

I’ve finally decided to share our story, so that others might be spared having to walk the road of grief alone. It’s a lonely road just the same, but knowing that there were others who felt the same confused mixture of anger, sorrow, loneliness, and even hatred, and perhaps being able to reach out to someone if I wanted to would have made a huge difference to me, so I hope that this will somehow make a difference to somebody out there…

It’s strange with babies, whether you are lucky enough to have one in your arms, or have been left with nothing but empty ones, forever aching to hold and comfort your little one; everybody else always seems to think that they know best.

They know what you should and should not do, how you should feel, how much you should cry, on and on and on…but above all, they always seem to know when you should be ready to “move on”.

Truth is that no one can know this. Losing a child is a wound that only ever heals on the surface. Though it won’t always be as painful as when it’s fresh and raw, it will burst open and bleed from time to time throughout the rest of your life.

So, if you’re reading this, I want you to know, whoever you are, that you are not alone, and that whatever you’re feeling is right for you. Take as much time as you need. You have a right to your grief. It’s a journey, not a destination.

****

I was 5 months pregnant when I lost my little baby boy, but the midwife still asked me if I wanted her to refer to him as my baby or my fetus. How do you even say such a thing?

The doctor who performed the last ultrasound didn’t seem to think that I should mind very much either. He asked me if we had been trying to conceive for a long time before I got pregnant , and when I answered him no, he dismissed the whole thing, saying that we could make a new baby soon…

When I still was hesitant to end my baby’s life, he suggested that I make a visit to the NICU, they could tell me all about how these little ones suffered if I needed convincing.

Being presented with the fact that your baby won’t be able to live and being forced to make a decision as to whether you should terminate the pregnancy and let your little one go as easy as possible, or carry to term, and watch him or her die slowly is a heartbreaking experience without inconsiderate people added to it, so the least they can do is treat you with compassion and respect, but these people didn’t have any to give.

Babies who are born in week 19 can be born alive, and live for up to an hour, but their fate is sealed; it is, to my knowledge, not possible to save a baby before 23 full weeks, and at most hospitals here they don’t even try unless one is 24 weeks along in the pregnancy.

Apparently that also means that babies born before that magic mark on the calendar don’t count…they have no value…never lived…never died…and therefore, never existed…just a miscarriage; suck it up and move on…

“They don’t only die slowly, they are also born severely disabled,” he continued, as if stating that fact would automatically get me to realize that this unborn child was a waste of time.

Without enough amniotic fluid, oligohydramnios, my baby’s lungs could not develop. There just wasn’t enough fluid for him to practice his breathing. He couldn’t grow properly, and he couldn’t move around to strengthen his arms and legs, which meant that his bones would grow crookedly. My womb, which was supposed to protect and cradle my little one, had now turned into a cage, squashing him from all sides…possibly hurting him every time he tried to move. The picture still haunts me. 

If a medical termination is made, it’s because of a risk for the mother or a risk for the unborn baby, and those cases have to be treated with compassion. That should be pretty obvious. Especially so when it’s late in the pregnancy and one will have to give birth to a child who might even be alive. I understand that they have to be honest about the odds, but there’s no doubt in my mind that there is a better way to convey the information.

“They all die here in the NICU.” He finished. And with those words he sent me on my way to think about my decision.

At least the nurse was compassionate, and said that she understood that it didn’t make a difference that we had been able to conceive easily. The only thing that mattered was what would happen to this child here and now. But she too said that there was no hope, and I trusted her words more than those of the doctor.

I’ve heard that other hospitals, in other countries, give the mother the option to be sedated during delivery, but not so in Sweden.  Here it’s believed that a natural birth is the best option to be able to achieve acceptance of one’s loss.

I wonder if that includes giving birth to your baby in the hospital bathroom, while the midwife on call wrongly assumes that one is pushing the alarm button because it’s time for morphine, and decides to go get a syringe ready instead of checking on the patient.

The consequence was that I ended up taking care of my own little baby when he came into this world. He made one feeble attempt to live there in my hands, before he relaxed and went to sleep forever, and I wanted to curl up and die with him.  Had it not been for that I already had a wonderful little boy who needed me, and who could give me a reason to stay alive, I might have followed him on his journey. No matter where it would have taken us…

I didn’t want to put him down. There was nowhere soft to lay him there in the bathroom, so I held him with one hand long enough to take the placenta with the other and put it over in the sink.

And still they did not come…

When they finally did show up, the nurse just went straight over and held me. She was the only person who showed some kind of empathy that day.

She talked to me softly, as if I was a child in need of comfort, said that she had to take him, and that I could get him back once I had cleaned up a little bit…There was blood everywhere, though of course she didn’t say that. She didn’t need to, I could feel it gushing out of me, and hear it splashing on to the floor.

Now the midwife had finally got there as well , and sort of apologized for not getting there sooner, but she had been convince that I was just going to ask for morphine , and she didn’t think my “fetus” would come that quick.

The midwife took him away while I showered and then she came back to check on my bleeding while the nurse cleaned up the mess. 

She wanted me to lie down, and the next time we pushed the alarm button I could hear her run down the corridor to my room, so she must have been a bit concerned.

“If you’d like to have your fetus with you I’ll get it as soon as I’ve made sure that you’re alright.” She said. And then she quickly added, with a disapproving note in her voice, “Oh or perhaps you would like me to refer to it as your baby?”

My baby just died in my hands, and she was talking about a “fetus.” Not a little boy who had just taken a piece of my soul with him to the other side… Just a fetus with no chance of survival… Just an object, best forgotten and something one should dispose of as quickly as possible.

“Would I have liked her to refer to him as my baby?”

“Yeah, that would have been nice…”

Perhaps she saw little babies die all the time, abortions are allowed until 17 weeks and 6 days here. No questions asked , and after that, they can still be performed until week 22, if one has obtained permission, which of course is granted when it’s for medical reasons, but also if the baby has tested positive for example down syndrome, or if the mother  will be unable to take care of the baby. 

I’ve heard the horror stories about little crying babies, who gasp for air for up to an hour after birth, but since it’s an abortion, neither doctors nor midwives are allowed to do anything for them, so they are left to die…slowly…and all alone…

I can understand how that would make it difficult to have any sympathy for those women who have decided that they don’t want their babies, even though I would prefer to believe that there’s some sort of a tragedy behind such a decision more often than not, especially when it’s that late in the pregnancy.

But I wasn’t there because I didn’t want my baby , and it should have been pretty obvious to anyone that I wouldn’t have spent all that time in the hospital if I didn’t care. So, yes, I would very much have liked her to show some respect for his little life…and for my broken heart!

“I want my baby.” Was all I said, and she left the room with a sniff. 

She brought him in with the placenta still attached. I was too sad, and too much in shock to ask her if it had to be that way. I just held him for hours and cried and cried.

I didn’t know what to do. I later thought that I should have someone help me cut the umbilical cord, so that I could have given him a bath, and wrapped him in a blanket at least, but I’ve been able to come to terms with that perhaps letting him be attached to the only source of life he ever had was of some symbolic worth.

I didn’t have a name picked out. I wasn’t going to call him anything but Lille, which means little one in Swedish. People think you’re silly if you name a baby who’s not ready for life. Technically I just had a late miscarriage.

After week 24 however, it seems to be alright to count your loss as a real loss, but I don’t think it matters to a mother if her baby died in her arms at 19 weeks or at 24 weeks; all that matters is that she doesn’t have her little one.

I couldn’t get over him not having a name. I kept worrying about it , and after a few weeks it got to the point where I couldn’t think of anything but that he would think that I didn’t love him or want him when I didn’t even bother to call him anything. So I decided to give him the name Andreas.

I have always liked that name, and though my sons will never get to grow up and play like brothers do, I like the sound of their names together. My sons…Alexander and Andreas…Though I’ll only ever have the privilege of watching one of them grow up; they’ll always be together in my heart.

I know I keep saying “I” and “me”, but I was actually not there all alone that day. Andreas’s dad was there with me. He was the one who pushed the alarm button when our son was born, but other than that he wasn’t of much help.

He cried over him as well that day, but it was only during the last weeks that he had changed his mind about caring about him, because as he said after my contractions finally stopped that day when it all started, “It must be wanting to live.”

He was of course shocked by the experience as well, but in the end it was impossible for me to forget that this was exactly what he had demanded that I put myself through when I told him that we were going to have a baby.

He didn’t want to be bothered with the responsibility of another kid. It’s painful to remember how he acted during that time and it’ll always be impossible for me to understand how someone who is and always have been, such a caring friend, could change into such a selfish, heartless monster.

When I first realized I was pregnant, all he said was that he didn’t want it. I agonized over it for a week, but finally set up an appointment for an abortion. But when the doctor examined me it turned out I was 14 weeks 3 days along, and not 7 weeks as I had thought.

Did you know that after 14 weeks it’s a developed little baby? The little one’s got a lot of growing to do and the organs need to mature, but the baby’s got everything, even tiny little fingerprints. Babies this age can grasp, squint, frown, and grimace, and may even be able to suck his or her thumb.

If you poke your tummy gently your baby will feel it and start rooting. It’s a rehearsal for the important instinct of searching for your nipple once your little miracle is born.

I knew that I couldn’t kill my baby when I was that far along already, but it didn’t change anything for his dad. All he could think of was that it might be harder to find a babysitter for 2 kids than for 1, and partying was very important to him, so he still demanded that I’d schedule another appointment to go through with the abortion.

I was, and I honestly think that I still am, shocked by his reaction, completely and totally stunned. He had known all along that we didn’t have any protection. What did he think? That we had built in birth control?

I didn’t know what to do. He had recently gotten a job 400 km away from where I use to live, and I had just moved all that way to be with him, leaving my friends and my family behind. Up until that point, I had honestly believed that he loved us. I had known him since I was 14 years old, and yet it had just turned out that I didn’t know him at all…

I would have needed someone to talk to, but I told no one. Yet to this day I cannot understand it. But I figured they’d think it was my own fault. That I shouldn’t just have taken for granted that him not taking any precautions, when he knew that we had no protection, meant that he would want to have a baby with me, even if we weren’t officially trying to get pregnant.

I honestly considered the abortion again, but I couldn’t do it.  I was getting ready to leave him, and raise my children on my own, but I never got that far…

I came down with some kind of infection a few days later. I was tired, exhausted, both physically and psychologically, and I hadn’t been eating enough. I couldn’t get my fever to come down, and my contractions started early in the morning a week after I had found out how far along I really was…

T actually stayed home from work and came with me to the hospital. Imagine that…

I didn’t get to see a doctor until around 2 in the afternoon, and by then I had been having contractions for several hours. My water broke about 15 minutes before the doctor finally had time for the girl who was just having a miscarriage in the waiting room.

As soon as my water broke my contractions stopped, and they were going to give me something to make them continue, but I didn’t want them to. Not if there was any kind of hope. The doctor said that there was a very slight possibility that the membranes of the amniotic sac would heal and stop the fluid from leaking out, and if I had been further along she would have put me on bedrest. There wasn’t much hope, but if I wanted to, we could try. 

In the beginning the doctor could see my baby swallow, which is important for the digestive system, and that gave us a little bit of hope, but in the end there wasn’t enough to allow him to get ready for life outside my womb.

I stayed in the hospital for 3 weeks, but the water kept on slowly dripping out of me. T came to see me almost every day, but Alex was staying with my mom 400 km away, and I missed him terribly. He was 3 and a half years old at the time, and didn’t understand much of what was going on. I had never gotten the chance to tell him about the baby before things went wrong, and knowing the statistics of pPROM, it didn’t make much sense to tell him that his wish had been granted. I don’t know if I was right or wrong, but he was constantly talking about how much he wanted a little brother. It just didn’t seem fair that he should think that his dreams were coming true, only to have them crushed into nothingness if his brother didn’t make it.

Finally, I asked to be transferred to Lund to be closer to my family, and they seemed relieved to get rid of me.

Something happened that last night in the hospital, and I could feel the water come gushing out of me. 

My mom drove all the way over there and picked me up, and she came with me to all examinations at the other hospital. Both she and my older sister, who was just as far along in her pregnancy as I was, were a great support. They called me every day, and my sister even offered to come stay with me. But I didn’t want her to. She gets so easily upset, and I was worried about her losing her baby, too.

When I got examined in Lund they gave me no hope of my baby surviving his first couple of hours. It was highly unlikely that he’d make it long enough in my womb for them to make an attempt to save him anyway, considering the higher risk of infection for both mother and child when the membrane of the amniotic sac is torn, and the risk of the umbilical cord being compressed when there’s not enough fluid to protect it, but if he did he would die a slow and agonizing death, struggling for oxygen.

Not a day goes by without my thinking about him. I made my decision out of love, and a wish to protect him. I couldn’t let him suffer for my own selfish longing to hold him in my arms; thus far I had to agree with my doctor. I might not have gotten the chance to hold him anyway. He would have needed so much medical attention. Still, I will always second guess my decision to terminate my pregnancy every time I hear a story of a baby surviving against the odds.

I miss him…

I will always miss him…

Helene blogs at http://areasontostayalive.blogspot.com.

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Comments

  1. Helene, I am so sorry for the loss of Andreas. I am so sorry that you had such a horrible experience with his birth. My son was stillborn on 9/12/00. I have said a prayer for you that you would feel God’s comfort and peace, and that you would hold your son again in heaven one day.

  2. I’m so very sorry for your loss as well. Thank you so much for reading and, for your kind words. Wishing you peace and healing.

  3. Dear Helene,

    I hear just what you’re saying. I’ve only just gone through a recent miscarriage myself after the embryo I was carrying cease to thrive beyond 7 weeks and all of this occurred only a little under a year after losing my first child through a medical termination after it was diagnosed with Down’s Syndrome and the added complication of a Cystic Hygroma. I was told by certain member of my family that they’d support my decision if I decided to go ahead and get a termination but not if I decided to keep the baby, when in reality what they really mean is that they’ll support you for the first few weeks after losing your child but then after that they expect you to somehow just get over it, not realizing there’s not set deadline for grief over the loss over a child and what’s more how it can affect you in terms of any consecutive pregnancies you might have especially if like myself you’re 35 years or over and getting on in your maternal years.

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