Wednesday, August 19, 2009

The pregnancy and the big surprise!

When we found out that I was pregnant we wore very happy as this was our first child, the decision about having a child was hard….you never know when it’s the right time, if you should wait for few more months or years. The pregnancy went really well and I was with a very good health the whole time. The time didn’t go to fast as we was very excited about having our first child, everything had to be ready and perfect for our little baby boy.

After a lot of thought about If we should have the early ultrasound or not at 12 weeks we decided that we wanted to have that done and check if everything was ok with the baby. Most people that I know have had that test done and you just get used to the idea that this is something that is the part of the program, so going to that screening without even the thought is very common with couples here in Iceland. At the screening she was measuring the neck of the baby and it took her a very long time….she said something about that she felt the neck was kind of thick, thicker then usually and that we have to have a blood test done. She talked about some numbers that we did not understand at the time that my probability of having a down syndrome child would be high as I was very young only 26 years old if she only took my age and the thickness of the neck. I was shocked and could not believe this, as I went to this screening just because and never did I think about that something would be wrong with my baby and the news was hard to take. I went to the blood test and went home cause I had to wait for at last 2 days to get the results. I went home and called my mum, we cried and talked about the possibilities if something was wrong with my child. When the blood results came back I had already made up my mind that I would not be having this child if the likelihood of down syndrome would come out high. 2 days later I had a phone call from the nurse telling me that the blood results were real good and that the likelihood of having a baby with downs are not high at all as they were 1/723 and that I would not have to worry about anything at all as I was young and healthy. At that time I did not understand this probability formula that calculates these likelihoods and I was just happy to hear that my baby was fine and I didn’t have to think about something being wrong.
The pregnancy went on and I was feeling good and so excited about the new family member…..

I was due on February 26th, and on February 26th at 7am I told my fiancé that our baby was coming…..I was very excited and I told him that this is as perfect as it can be that he is coming on the exact date and all!! 26 hours later a baby boy was born, a baby that was not expected and not so exciting. At first we did not realize what it was that was wrong or if anything was wrong at all….but I told my mother that was there that he was very strange…. Few ours later after we went into our private room at the hospital the doctor came in the door, I was nursing Kristófer and we had just finish saying how proud and happy we was…..the doctor started looking at him and doing all kinds of test on his body reactions and muscles, after few minutes of silence he asked us if we though he was strange, strange I though??? No I don’t think he is strange at all…..not anymore at least, I just though that this little baby was tired after all the hard work of getting into this world and he would just have to rest. We told the doctor no, and then I asked him if he though he was strange? He told us yes…..and that he thought he looked like baby’s with down syndrome. Down syndrome I say?? And repeat myself few times……he told us yes and that he would have to take a blood test to confirm it, and there he was out the door.
I sat in the room and looked at the baby and thought that I could never keep this baby!! He had down syndrome and that was not what I had planed for my baby, and something like that would/could never happen to us!! We sat in silence and started to cry….our lives were ruined !!

We called our parents who came right away to the hospital…nobody spoke a word and everyone thinking what to say or think. We cried…..and then I said that I could not keep this baby, I did not want to hold him or touch him and I just wanted to tell the doctor to take this baby and I was going home and in a while I would just have another one. Then I thought I would have it adopted….but did anyone want to adopted a baby like that?? The doctor came in again and told us that he had to take the baby to check his heart because 50% of baby’s with downs have a heart failure and need a surgery. We went with the doctor to check his heart and he was talking to an intern what was happening and that he would explain to us later, thoughts like “I hope he is that sick that he will not make it” came to my mind and looked at my baby that had only been in this world for few ours. I thought it would be best for all of us if he would just not make it, because life with down syndrome is no life at all! The doctor told us that he needed to stay in the NICU so they could keep an eye on him, he also needed an extra oxygen, and then he explained to us what he saw in the ultrasound, Kristófers patent ductus arteriosus was still open and his aorta was very tight so the bloodstream in the body had a difficult time to get to all the extremities. I did not know what that meant, I just thought that he was very sick.

When Kristófer stayed at the NICU I hardly wanted to touch him or take care of him, I just wanted his father to do everything that needed to be done with him. We felt like he was not our baby but we felt sorry for him so we had to take care of him. He was so little and weak and he just laid there in his glass box, with parents who did not want to keep him at all and that thought it would be best for everyone that he would not make it!!

After 5 days at the NICU the doctor told us that tomorrow we might just take him home, he was doing so well that they trusted him to go home. I thought the doctor was crazy, I didn’t want to take him home at all, what was I suppose to do with him at home?? All alone?? No doctors or anything…..I didn’t trust my self to take him home and I did not want to, I was also very scared of being alone with him. When we came home it was all very strange, no glass box and no tubes or monitors peeping at you all the time. The breastfeeding was hard but I thought to myself that I was not going to give up. I was very numb and didn’t know what I felt……but time went on and so did my feelings towards Kristófer, I started to feel that I did care about him and that I was so happy he did not need a hart surgery. I thought I could never love him, but he was proving me wrong time by time.
Before I was mad at Kristófer not being what I was waiting for and I was grieving the healthy baby I did not get. When I was pregnant my mum came to my house to decorate our little boys room, all the cloths were ready in the drawers. I remember telling my mum when Kristófer was born "We have everything ready at home and now there is no healthy baby" and my mother told me that he also needed a room and a bed to sleep in and cloths just like every other baby. She was right he needed everything just as a healthy baby....and he is healthy....he just happens to have something little extra.....and he also gets a little extra love!!


  1. Goodness you have me sitting here in tears.I had so many of the same fears. I pretty much new Emilia would be born with DS. I didn't know if I would be able to love her as much as my other children. I didn't even buy any baby clothes for her. The unknown is a scary place. But how these little babes changed our lives. Can you even imagine not having your Kristofer now? He owns your heart.We are so lucky.

  2. No I cant imagine not having him now...I would never trade him for anything! It is so strange how we mothers often just know something is not right.

  3. Thanks for stopping by my blog. I look forward to following your blog. Your birth story was very familiar for me. I remember thinking in the beginning that it would just be better for Morgan if she didn't survive. I now realize I was just being selfish and thinking what was best for me at the time. I am glad you didn't know before he was born so that he was given the chance to show you he deserved to be born and loved just like every baby. Morgan is almost 7 years old and such an important member of our family. Congratulations on the birth of your son. I have had 2 more children since Morgan and they are the best help for Morgan and her development. I hope you will consider having more children down the road since you are young and just starting your family. Much love!

  4. What an amazing post! Your little guy is just adorable!!!!

  5. Wow what a story. I knew that my little one had ds. We found out at the same time as your first screening with a thick nuchal fold and heart defect. I can't imagine finding out at birth. It's amazing..the love you feel for our little ones..even though they are not what we expected.

  6. Your honesty is so raw that I hurt for you as I read your story. Your Kristófer is beautiful and I am so happy for you and for him that he is here in the world. He is precious and over time his differences will fade in your heart. He will amaze you with his strength and love.

    And you probably wouldn't believe it but there are hundreds of families that would like to adopt a baby with Ds just like your son... so hold on tight to that cutie!

  7. I too knew the moment I first held my Joaquin that something was different but he wasn't diagnosed with DS until he was 3 months! Congrats on the birth of your beautiful son! I'm so impressed with his swimming too! Joaquin loves the water as well and gets water therapy once a week. He has a smile on his face the whole time!

  8. wow, thanks for being so honest. I found about our Bennett when I was 17 weeks so I had some time to prepare but I appreciate you sharing your true feelings and isn't it funny how our hearts can totally turn around and love and accept our children just as they are.