Elric's home page

Elric was born on the 19:th of December 2003. He had a rare chromosome disorder called Trisomy 13 (or Patau's syndrome) and could only stay with us for 13 days. On this web page we are telling Elric's story, both because we want everybody to know what a lovely little baby he was and because we want to share our experience of this rare diagnosis with others.  

Like many other babies Elric was very much longed for, and there was a lot of happiness for our families and us when we first new about the pregnancy.  I was feeling fine all along, even if I couldn't escape some of the most typical symptoms of pregnancy. Everything seemed normal, the heartbeats were good, all the tests as well, and my belly grew just like it should. We also went trough two ultra sounds (Elric was too small to measure properly on the first one), but everything seemed to be fine. Therefore nothing ever made us think that Elric was going to be such an unusual baby.

It started in week 39 when the water broke. I called the hospital as I had been told to do and they asked us to come in for a check up. Around two hours later we arrived there and were brought into an examination room. By then the contractions had started and I thought that they came quite often, even if they didn't hurt so much yet. A so-called CTG-machine was connected to my belly, to register my contractions and Elric's heartbeats. The midwife left us with the machine and told us that she was going to come back within 20 minutes. 30 minutes later she was back, and by then the contractions were hurting really bad. After seeing my face she wanted to see with her own eyes how things were progressing, and I guess we were both as surprised when she told me that it was time for the delivery. When she went away to arrange with a delivery room I thought that we were going to become parents already on the bunk in the examination room! My husband had to call for help and then they brought me directly to a delivery room. I must have scared the other becoming mothers in the hall with my screams, but thanks to the laughing gas I calmed down a little bit, and after an hour in the delivery room Elric was born! I remember his screams as a little bit different than I expected, he sounded so small! And before I got to hold him in my arms for the first time, the midwife told me that he had a cleft lip-jaw-palate. By then it didn't worry me much, because I was so happy to finally be able to hold my little baby in my arms!

A doctor came to see us in the delivery room about an hour after Elric had been born. Unfortunately she found more external malformations, something she told us could be a sign of a more serious defect, a so-called syndrome. Elric was therefore brought to the children's hospital for observation and further examination. My husband followed him there, while I stayed in the delivery room. I was so happy to finally have met Elric that I succeeded to be quite positive while I lay there in my loneliness. For example, I remember thinking that no matter what kind of problems the doctors would find we would manage it. How wrong I was!

The day after Elric was born we met with another doctor to discuss Elric. He told us about every malformation they had found, one after the other. And for each one of them I thought: we will handle it! Until he told us that they suspected Trisomy 13, and that the majority of the children with this diagnosis dies within the first six month, and that the ones that does not becomes severely mentally retarded. That's when I finally realized what had happened; we had become parents to a wonderful little son, but he was already leaving us! And even if he would stay with us longer than the statistics said, he (and we) were going to have to struggle for the rest of his life. We were also informed that it is unusual to try to keep these children alive with the help of respirator or heart surgery, since it has turned out to be in vain and only causing more suffering. Three days later a chromosome analysis also confirmed that Elric had Trisomy 13. (Until then we were somehow hoping that Elric, in a strange way, only had all the external signs of Trisomy 13).

Elric stayed at the children's hospital, while we chose to sleep at home and visit Elric at the hospital as much as we could. It was a very special time, when we succeeded to put most of the thoughts about our future on the side and focus on Elric. We spent most of our time at the hospital, holding him in our arms, feeding him (with a tube) and caring for him the best we could. We got to know his personality a little bit, and like all parents we thought that our own son was the cutest little baby one can imagine. We laughed at his cute little noises, caressed his soft cheeks and could spend hours just looking at him. He was so strong in the beginning, and I think we thought that he would be one of these children that survive the first month at least. Unfortunately he got weaker the second week. He needed help with the oxygen and got a little tube with an increasing amount of oxygen gas in front of his nose. He also got a lot of phlegm in his throat that blocked the air out and had to be sucked up by the nurses. He also had difficulties keeping the growing portions of food. 

The last day we spent together he was so tired and angry. We started to think that he had pain somewhere, since nothing we did seem to help him relax. Therefore, when we left him that evening we were both totally exhausted and felt so bad about not being able to help our little son.

In the morning on the 2:nd of January, just before 10 am, we came to visit Elric at the hospital as usual. A nurse was standing by his bed and we could see on the monitor next to it that he was not getting enough oxygen, and it was looking worse than ever before. We waited a bit, stayed where we were and let the staff do their job. We thought that soon everything was going to be fine again, like it had been so many times before. Elric moved a bit, waved with his little arm and made some small noise. A doctor was sent for and while we waited for him two nurses were trying to make Elric breath properly. They were rubbing his hands and feet, but with no effect. Instead the monitor showed a level of oxygen reaching 0% more and more often. For the first time I thought that he may not be able to come back to us this time, that it was already time for us to say goodbye. After a few minutes the doctor arrived, he listened to Elrics heart and breathing, and then told us that Elric had stopped to breath and that it was best for everyone to let him go now. Then I finally stopped believing in miracles and tears fell down my cheeks. I took Elric in my arms, wrapt up in the blanket he had got from us on Christmas, and then we sat together waiting for the moment when his heart would stop as well. It is hard to find the words to explain how it felt seeing our very much longed for little son fall a sleep for good!

When everything was over, me and my husband got a chance to be alone with Elric. We sat with him in our arms, tried to memorize what he looked like and how it felt to caress his cheeks. We said all those things we wanted to tell him one last time. After a while we decided to make him ready for the final goodbye ourselves. We cleaned his little body and then dressed him in his nicest clothes. Then came almost the hardest moment of them all; to leave him in his bed and to go home. (We thought that this was the last time we would ever see him, but later on we choose to also prepare him for the funeral on our own.)

The ceremony took place on Friday the 16:th of January 2004, two weeks after Elric had left us. Together with our closest family and friends we said our goodbye to Elric in a little chapel. The flowers, the music, the words from the priest, the cold but clear winter weather, everything was so beautiful. All of that helped making the funeral to a beautiful memory, despite all the sadness and pain. Pictures from the funeral and the grave.

Elric had the most common form of Trisomy 13. That means that he had a full extra chromosome 13. This fault occurs already at the conception and is normally due to a defect in the woman's egg.  (That is because when the sperm cells are racing to the egg it is very rare that a sperm with any defect wins over a healthy one). At the conception 23 chromosomes from the egg cell is being combined with 23 from the sperm cell, and the total number of chromosomes becomes 46 (Elric had 47). This is how babies receive genes from both parents. Sometimes something can go wrong in this quite complex process. For example, the egg or the sperm can have added a wrong number of chromosomes when they first met, or there can have been some disturbance later on when they merged and the cell division started.

The consequence of a  full extra chromosome 13 is that the foetus doesn't develop normally, which results in malformations and severe mental retardation. It is, for example, common with cleft lip and palate, small eyes, low positioned ears and extra fingers and/or toes. The malformations of the eyes and ears often leads to reduced, or completely lost, vision and hearing. The most serious malformation though, that often causes these children's early death, affects the brain. In addition there is often malformations of the hearth, kidneys, intestine and genitals.

For Elric the extra chromosome lead to external malformations like cleft lip-jaw-palate, small and low positioned ears (one ear also lacked an opening to the auditory meatus), small and odd looking eyes, a very small cavity in the scalp, small genitals, a typical line in one of the palms, so called rocking feet (somewhat extended heals), no visible testicles and inguinal hernia. Malformations could also be seen on the hearth and the brain with the help of ultra sound. The malformations of the hearth affected the blood flow and the pressure in the hearth, while the brain had a malformation in the front lobe.

Here are some Swedish statistics that in one way or the other show what an unusual baby Elric was.

Please don't hesitate to contact us if you have any question or comments, or if you want to share your own story with us. 

Last up dated: 2006-08-07 (best adapted to Internet Explorer and programmed with FrontPage).