Life Upside Down

The last days have been the best of both mine and Bookie’s life. But also some of the hardest we have ever experienced. Friday and Saturday was filled with joy and the thrill of being new parents, and on Sunday, we got some news that made our heads spin:

On Sunday morning it was time for the Child doctor to do the second examination of our Prince Vince. As it was early in the morning, Bookie was not yet there. To sum things up, the doctor suspected our child of having Down’s Syndrome. There were some signs on his body that were typical, but there were also some typical signs he did not have. On his feet the big toe is located rather far from the rest of the toes, and in his hands the lines go across his palms. These are two typical signs of Down’s syndrome. He also has his eyes a little tinted upwards, which may or may not be a sign. That can come just from being pressed out just 2 days earlier. He does not have the most typical sign, which is white dots in the iris of the eye. There are also some signs on the chest/nipples, which he does not have.

As the news were delivered to me, I was completely chocked. We had done a genetic disease test in the pregnancy, and the results were not splendid, but OK. On average 1/870 pregnancies in our age group, with no family members with Down Syndrome, result in an outcome of the Syndrome. Our stats were 1/1200. We could have done an amniotic fluid test (the one where they stick you with a big needle in the stomach and collect some amniotic fluid and test it), but the risks of miscarriage is 2/100 for that. For all of you who have never been pregnant, when you or your partner does, you will find it is a world full of statistics, and there are hundreds of tests available. But the more tests you have, the more stress you put on yourself and your baby, and the higher the risk of a miscarriage. We had also done an ultrasound in week 12 where they measure the neck. When the neck is thicker than 2.5, you are in the risk zone, our number was 1.7  – should be on the safe side there.

It was decided by the Doctor’s that on Monday we would do an outpatient trip to the University hospital in Graz, and go to the children’s neurological department to do some bloodtests. We would return to Voitsberg LKH the same day. The clinic visit was one of the worst ones in my life, but also very enlightening. In the waiting room we met some amazingly strong people, who showed us that it does not have to be so bad. One girl I spoke with had her son in week 28, he weighed 550g, has malfunction of many organs, nearly deaf as well as other health issues. But she was so strong and showed such love for him, and told us how you have to look for the small things and find the positives in the negatives. I was amazed by her story, and I hope to be able to get in touch with her again.

The tests were done and we sat down and talked to the head Dr of the clinic. He told us that it is very likely that Vincent has Down’s Syndrome. In a way I am happy now that he prepared me for the news early, but it was the hardest day of my life… As many children with Down’s Syndrome are born with permanent heart problems that can result in many complicated medical situations we were sent on to do an ultrasound of Vincent’s heart. They would also do an EKG, blood pressure and test his heart beat. This was also hard to see our little baby hooked up to a big machine and lots of electronics on his little body. After some whispering between the Dr and the nurses, the Dr told us that his heart is in excellent shape. Nothing un-normal for a newborn baby, and there were no signs of any problems related to heart failure and Down’s Syndrome. No news has ever sounded so great to me. Both me and Bookie broke down in tears and just hugged each other. After this we could finally go back to Voitsberg and the hospital there. The blood results would be in on Wednesday (the 17th).

The rest of Monday and Tuesday was spent in a daze of confusion, mixed with hope and a lot of questions. We immediately got a lot of support from the hospital and of course our immediate families and the few we had chosen to share the news with. On Wednesday morning we went home from the hospital. At 3 p.m we got the results and it is now confirmed that our beautiful baby has Down’s Syndrome or what is also known as Trisomie 21. What this means from a genetic perspective is that he ahs 3 of chromosome 21, instead of 2. We do not yet know what severity he has, as this takes an additional two weeks to find out. There are many different levels of Down’s Syndrome, and we will have to wait and see.

It is hard to see that the baby we have been longing for so long has something that will make him stand out in a society that is not always so nice and easy to deal with. We accept him and love him just as he is. There is no other baby in the whole world that we would rather have and I am glad he is part of our family. He is already an amazing little man who spreads so much love and happiness and we can not wait to see him grow up and become his own little person. vincent-and-bookie-sleeping.jpghome-w-vincent-1.jpg

home-w-vincent.jpg

14 Responses

  1. Prince Vince looks marvelous. I have my little Princess Isabel.. who was born 6-28-2006 and also has Trisomy 21. We have no heart problems.. actually we are pretty close to normal. ( compared to others anyway.. ) Is Vince walking yet?
    Thank you for sharing,
    Renita Ohio, USA

  2. Prince Vince is absolutely adorable – I was 29 when my daughter Mia was born w/Trisomy 21. She is now 3 1/2 and is an absolute joy. She is loved by everyone she knows.
    Best wishes for you & your family!
    Kelly, Salt Lake City, UT

  3. my18yr old daughter just found out that here identical twins have downssyndrome. we are dur in april 08

  4. […] turn out to be the biggest experts and many do research on a daily basis. I also got to tell our storyabout finding out that Vince having DS. I told them how we thought we would never smile again, I […]

  5. […] it. I chose to tell all friends via my blog (a few knew before hand). That entry can be read by clicking here. For me, an even bigger chock came a few weeks later when we found out Vince had translocation […]

  6. Pernilla
    30 Mai 09:31
    Hej Kickisötnos!
    JAg har just läst om lille Vince (har varit off-dator ett tag). Att ha en underbar mamma som dig kommer att vara det bästa för er lilla prins. Min kompis har en lillasyster med DS och hon är världens sötaste och goaste och även mitt kusinbarn har DS. Det är en resa, en underbar sådan! Krama prinsen från mig och fortsätt skriva lika mycket som du gört nu, det är så kul att få vara nära fast man är långt bort!! Puss på dig ; )

    Lina
    21 Mai 18:11
    (http://spaces.msn.com/linajpersson/)Hej Kicki! Vill säga Grattis till er fina lille kille! Kram från Miriams vän (vi sågs vid bröllopet hennes). Vad fint du skrivit. Ha det underbart ni tre!

    Alexandra
    19 Mai 16:14
    Hjärtat, du vet att du har mig här, tillsammans med att andra vänner. Prince Vincent är den sötaste lilleman som finns! Nu ska jag ut och googla om DS, så jag känner mig påläst! Du är bäst.

    Angela
    19 Mai 13:58
    Hej!! Har precis läst och tänkt, va otroligt starka ni är, precis som Mamma Miriam skriver så är Vincent en otroligt lyckligt lottad liten kille. Jag lovar att jag skall ge dig allt stöd och hjälp jag bara kan, var heller absolut inte rädd för att be om hjälp, jag kommer att finnas här, alltid, hela tiden!!!
    Ser fram emot att träffa er när ni kommer till Sverige!!!

    Kram

  7. […] to write about this for a long time, and somehow never got around to it.   It is about this, my very first post ever about Down syndrome. It was when I told almost everyone we knew that Vince had DS. He was not even a week old, and the […]

  8. I was 20 yrs when my T21 son, Eli, was born 32 years ago. The doctors informed my husband first of the Downs…only way back then, the docs used the term, “Mongoloid” Well, my husband thought I had cheated with a Mongolian! LOL
    He realized his mistake, and we laughed for awhile.
    Love to Prince Vince

  9. Dropping in to say hello and let you know how absolutely beautiful your Prince is! my Grady is just 3 months old T21 and just the light of my life, I can see your Prince is too! Love your blog!

  10. Heya i am for the primary time here. I found this board and I to find It truly
    helpful & it helped me out a lot. I am hoping to provide one thing back and aid others like you helped me.

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