Little Evy Kristine was born with the genius Trisomi 18.
Found information online:
Siri and Odd Gunnar found great support in reading about other families with trisomi 18 children on the Internet. They have made two websites themselves: www. evykristine. com and www. trisomi18. com
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Gjøvik, Thursday 5th. November 2009, the time is 15. 50: Siri Fuglem Berg calls on the mobile phone that rings at Føllingstads veg på Gjøvik.
It has been two days since she took a fetal test at Rikshospitalet. In a matter of seconds, life will change. Forever.
We spool time a further three weeks back: Together with her husband Odd Gunnar Paulsen (42), Siri is in happiness after being told she is pregnant with their other common children. From a previous relationship, Siri (42) has the children Einar and Ingrid.
As she is over 38, Siri receives a so-called duo test – a combined study of ultrasound of the fetus and hormone test of mother. The purpose is to calculate the likelihood of chromosome failure in the child.
Siri and Odd Gunnar thank you first no. They are determined that they will carry the child anyway, although it appears that it has trisomy 21 – better known as Down’s Syndrome. That it could be something else and far more serious, did not even hit them.
After an information session, they still decide to thank yes. The gynecologist thinks it’s smart so that you get time to prepare and make sure before birth, if it turns out to be a child with Downs.
The duo test is done in week 12 of pregnancy. The samples show less risk of Downs, but a slightly higher risk of the severe chromosome trisomy 13 or 18.
This is trisomy 18:
Trisomi 18 or Edward’s syndrome is a genetic failure where there are three – instead of two – chromosome 18 present in the cells.
About 70 percent of fetuses with this disorder die during pregnancy. Those born alive live on average over a week, although five to ten percent can survive the first year.
Still, it is 80-90 per cent likelihood that everything will be okay, but the uncertainty is no longer to live with. Therefore, Siri is allowed to carry out a fetal test in week 15.
Two days later, the phone will ring. Famling lifts the Siri mobile. Pressing the answer button.
The seconds stop. 15. 50 burns into eternity, while the male voice pushes out loud, square words: “The samples show that the fetus has full trisomy 18”.
Siris World is breaking up. She has read and cried of other family stories in the weeks that have gone and know exactly what the diagnosis entails.
Siri does what she can to not break down. She has three other children to take care of. She can manage to stay upright throughout the day. Waiting until no one sees her. Then she breaks into tears in front of the PC.
The tears often come in the next few days. When she is alone. Most often in the bathroom while she showers. Then nobody can hear the cool hiccups. The tears flow down the cheeks and mix with the water from the shower.
The message is as tough for Odd Gunnar, but he’s a little better not to keep everything inside. Fortunately, they are strong and close. The time they face is going to tie the couple closer together.
Both Siri and Odd Gunnar are doctors. Your colleagues are advised that they wish to cancel the pregnancy on the basis of the new information..
But for the parents who have seen the little heart beating, it’s far from any matter. Siri decides first. She will continue pregnancy. The choice is not religiously conditioned, but based on what she feels she will be able to live with herself. She does not really experience it as a choice.
Odd Gunnar is in doubt: “Is there an additional risk of Siri associated with continuing pregnancy?” Nothing suggests that he agrees with his wife.
However, health professionals have minimal experience with their choice and show little understanding: “Have you thought about the consideration of the other children? A trisomy 18-child will require a lot of you both during your pregnancy and the time she may live alive, “says the doctor..
Siri and Odd Gunnar get a meeting with their own profession for which they are not prepared.
They must fight for each response, and they feel like a hair in the health soup. Until they arrive at the National Center for Fetal Medicine on St.. Olavs Hospital in Trondheim, and finally Ullevål University Hospital in Oslo.
Here both the and the unborn child meet with respect and understanding. A pediatrician in Trondheim who has experience with 20 trisomy 18 children can tell that her impression is that the children were doing well while they lived. That means a lot for Siri and Odd Gunnar.
Carefeel increases as the stomach increases. Siri is afraid that people should look at the baby as a wasted child. No one can figure out how much value she has!
It hurts. It will be beautiful. It will be intense.
She has never felt proud of being pregnant. Never has she felt the care so strong. She thinks of the special girl she has in her stomach, and she thinks she wants her pregnancy never ending.
At the same time, she struggles with a bad conscience towards the other children. The unborn takes a lot of time and thought.
Siri makes every possible preparation. Talking with the priest and photographer. Preparing baptism and funeral. It feels important to take control of what she can, even though she knows it’s impossible to prepare to lose a child.
1989 gram miracle
The days go. The fetus, which has already been named Evy Kristine, stands out in the stomach of her mother. For every magazine torn off the calendar, parents and siblings Einar, Ingrid and Guro hope that they will experience their little life alive.
15. April 2010 is the magic date. At Ullevål, birth is commenced on the morning quarters.
12 long hours later, 14 minutes over nine, she comes to the world. 1989 gram miracle, and 45 centimeters of happiness.
However, the first time offers even more drama and gives the family a new shock.
The condition of Evy Kristine is much worse than they expected because the navel cord had resented several times around the neck. She is blue in skin and face. The heart beats, but she breathes badly.
Nearly lifeless she lies on her breast to mom before dad takes responsibility. He brings the daughter with him, and gently blows his life in the weird figure.
Siri is lying in bed. Ear, exhausted and scared. It feels like eternity since they left the room. Then they come back. The bright voice of the little breaks the silence, and then the cry comes. Everyone is crying.
– I was so incredibly happy to see her alive. And very proud, Siri tells Norsk Ukeblad.
She is sitting at home and thinking back. Her smile fills the spacious living room. Next to the sofa is the husband.
– You were proud, too?
– Yes, very proud.
They smile against each other while Einar (10), Ingrid (8) and Guro (3) alternate to sit on the couch and play around. So they also did the intense April days last year:
The family has got their own room at the hospital. Einar sits quietest with mom and Odd Gunnar, while Ingrid and Guro draw and play on the floor. The little girl is too small to understand what’s going on.
But Ingrid takes the steps to the sofa, looks at her mother and says, “Is she dead now?”
The children are present all day. Siri loves life in the room. It’s a good experience, even though they know that the time they want to get along with Evy Kristine is scarce.
The doctors fail to bring down a probe that will give her nutrition. The fragile body can not tolerate more attempts.
The hope of months has come to an assurance of days. Every minute counts. Siri does not have time to go to school. She brushes her teeth in the bed.
Odd Gunnar does not have time to shave. They enjoy the seconds, each other’s company, and not least, they enjoy the meeting with their little ones. Evy Kristine lives with a skin contact. They feel she’s doing well. Relatives come with cake and together they celebrate 1-day birthday.
Outside, the sky is blue, both this day, the next and the last one. The sun rays come into the room and light on Evy Kristine. This is how the days can be described: Warm and beautiful. At the same time difficult. They want so much more time!
A new breath of breath on the third day tells them that the time they fear is soon here. Evy Kristine survives the attack, and the last five hours will be fine and peaceful.
Sunday 18th. April 2010 at 16 o’clock. 50 she falls asleep on her mother’s breast with her father and sibling around her. Now they can hug her properly, and finally Guro dares to put her on her lap. Together they compose the foot and hand prints of the little sisters both in spells and in print on paper.
We are back in the living room at Gjøvik. Over a year has passed.
There will always be a child for little playful around in the big garden. The sorrow has been heavy, but the memories are preserved in five throbbing hearts and in the book and pictures in the memory box next to the couch.
One thing they agreed to: They would never be by the time they got together with Evy Kristine!
Two days, 19 hours and 36 minutes. So endlessly worth a lot.
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