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Heart Sick Children, to live with

Congenital heart defects

 With death on the doorstep

Families of Ida and Elin have lived with death on the doorstep since the girls were born.

- You have not been to the hospital before you have been there for over six months, says Tor, father to heart disease Ida. The family of Ida and family to Elin have spent months and years in a hospital, and several times threatened one death, heart sick twin theirs.

Children's laughter and play fills the house of the family. Today Denise and Kjetil, twin daughters Kristin and Elin in eight years and his son Martin for 10 years visit. Kristin and Tor are there with twin daughters Ida and Eirin as soon nine years and younger sister Kaja in five years.
But families have more in common than twins of the same age. For both know what it means to live with death on the doorstep. Both families have spent months in the hospital, and have countless times had to go there at full speed in the middle of the night.

Knew something was wrong
- We knew something was wrong when I was 23 weeks pregnant. We did not know the diagnosis, but it was something we knew, said Berit.

At that time the family lived in Hammerfest, and they got the message when they were on ultrasound examination at the hospital in Hammerfest. Immediately Berit sent to Trondheim, and placed at the Regional Hospital. 10 weeks prior to the time the girls were born by caesarean section. Then the whole apparatus ready.

- Uncertainty as to how it would go if we were going to get one or two girls, about how it would go with her who was healthy, with which she was sick ... We just floated on top, says Berit.

Dream Pregnancy
Kristin describes her pregnancy as a dream pregnancy. Everything indicated that the twins would be healthy. Five weeks early twins were born by caesarean section. Still there was no evidence other than that the girls were healthy and shapely. But in Ida found pediatrician one murmur, which can be quite common and harmless.

- But I like mother sent me to bed with it. I had to push to get them to investigate. I just had to get a confirmation that it was harmless, says Kristin.

When Ida was a week old, she had an appointment with a cardiologist.
- Then we were told that she had a very serious heart defect. I remember asking if it was possible to do something about it. The minutes were long before we got an answer, and a diagnosis. In hindsight diagnosis to be wrong, it was even more severe, says Kristin.

The couple were told that they had two hours to go home, pack, inform family and friends and decide if they wanted to the hospital or Haukeland.

Strange heart
- It was a shock and an inhumane choice to make. We had no position to know what was best to choose. But we chose Haukeland, and we could not have chosen better, says Kristin.
18 days old Ida was operated for the first time. Until then there was duct, a small blood vessel, which had kept her alive. Ductus is a shortcut past the pulmonary circulation, because the lungs do not work in the embryonic stage and will normally close itself after the baby is born. At Ida closed it out thankfully.
Ida diagnosis Persistent truncus arteriosus . A serious and very rare diagnosis. Thus, there is not much knowledge about the disorder, and the parents have not met others with the same diagnosis.
- Elin has a very strange heart. It's crooked, she operated for hole in the heart, she has very bad lungs, funnel chest and very bad stomach muscles. Dysfunction, mass compound smådiagnoser. The experts were fighting about it is the lungs or heart is most severe in her, says Kjetil.

Both families are well known in the hospitals, and think they are welcomed there. The problem is that there are so many professionals in health care and in the community to deal with.

There are many different diagnoses of heart sick children. It is appropriate for the type's heart, is wrong for another. Ida and Elin have very different diagnoses. But the lives of the two families are quite similar.
Ida has had four heart surgeries. In the summer of 1995, she underwent two major operations.

- We were told that there was a possibility that we had to go home without her. That's when it really dawned on us that we could lose her, says Kristin.

One thing was being in the hospital. But coming home, having to deal with tube feeding and oxygen around the clock, they describe as a marerittilværelse.

Threw up around the clock
For children with severe heart defects throwing up a lot, and they have no appetite. Thus, the probe feed. And the oxygen they need to have with you everywhere. Ida was implanted probe button on my stomach and had it until she was about. five years.

Elin was in the hospital until she was 15 months and received tube feeding there. But when she got home, she learned to drink tube feeding from a syringe instead. But just as Ida, she vomited several times a day. Today it is significantly better for both girls. Still they throw up more than most, for example, over exertion or after some food.

It is important for families to emphasize that Elin and Ida were severe heart disease, and that many have mild heart disease. How will the lives of heart disease and their families vary widely.

Family and friends frightened
In 1997, Ida suddenly poor again. She was constantly ill, could not bear the light and got seizures. All focused on Ida's heart condition.

- But I got a feeling that there was something else. Fortunately, she was sent to the CT x-ray and found out that it was an abscess on the brain. Two hours later she lay on the operating table. When she was well into the death, said Kristin.

Berit and Kjetil had no family nearby when the twins were born. Because of the risk of infection could not bring brother Martin and twin sister Kristin when they should be with Elin. Berit commuted daily between hospital and home and got a home help from the community.

- I do not think anyone dared to fit Elin. It's a little scary. But I have a sister who is a nurse, and she came and watched the kids one weekend for us, says Berit.

- People were afraid to take the baby when she was so sick, says Tor. Kristin agrees that such things can seem daunting.

The desire to be more help
- They called very much, but it was not what I needed. I did not have time to talk on the phone all day. I had no time to do chores, I had no time for anything other than the sick child. I was much afraid and depressed, and I wish someone could help me with some practical things in the house, or maybe could bring Eirin, who was fresh on something. In retrospect, many said they were waiting for me to ask for help, but you do not do it when you are so far down that I was at this time, says Kristin. After a while Kristin broke almost together of all the work. Then they also had a home help.

- For those who have a seriously ill heart, the life will be radically changed. Elin works in a different way now than she did. She can not be everything, but she has a good life, says Berit.

Disappointments for siblings
The siblings are not a regular working day. They experience many disappointments and fears.

- The siblings have to pay attention all the time. They are more caring, and they learn that not everything runs smoothly all the time. We have had to cancel holidays and skiing. When there is a risk of infection, they are not allowed to have visits from friends. I know there have been many disappointments for them. But this is just. As parents of seriously ill heart, the one always has a plan B, says Berit.

- The siblings have just become part of what needed to happen, just like their parents, says Tor. Since both Ida and Elin has twin sisters, the differences between them and their healthy sisters well. They are active and are involved in what they can, but even now beginning to realize that they can not manage everything. There is a limit to what they can do by running, climbing, skiing and cold.

Inhibited the development
- It's getting worse now, because both have a twin who is very agile and clever. It marks the. They seek younger playmates because they constantly have to stretch, says Berit.

- They have been hampered in their development. Because they were connected to various hoses, they never experience crab stage with it to creep around and move freely as other chicks. It characterizes them enough now that they have come to a stage where they have to think more independently, says Tor.

- Had we known what we know today, we would subject school for one year for Ida. It's python for us to see how much Ida struggling, fighting and screaming to manage homework and stuff going on at school, while her sister can do it perfectly. It's bad for Eirin is fresh too. She is embarrassed by her sister who fail thing. Darling is often unconcentrated and has problems with short-term memory, trouble receiving messages ... says Kristin.

Berit and Kjetil nods. They are familiar with these problems.

Plages with agony
- Today it is not the medical and acute that characterize everyday life anymore. Now it is the psychological aftermath of operations and procedures that make it tough. When they were young, we were uncomfortable with the part, now they notice it themselves, says Berit.

For why can not the same as the others at his age? Why harbors the outside? Death Anxiety has also become a new part of everyday life.

- Ida bothered much with it. We are a member of the Association for heart sick children. There is an association we have had very good advantage of being a member, but it also means that we are experiencing some deaths. It has very frightened Ida, and it's tough stuff. She has periods nightmare, and she cries a lot, says Kristin.

Will not marathon runners
Eirin had previous psychological problems because of all the problems of twin sister. Often parents traveled and Ida in the hospital at night. To protect Eirin awakened the her. When Eirin woke up, there were grandparents instead.

- We thought we were doing the right thing. In hindsight, it was much worse for her grandparents told her the next morning, says Kristin.

The future looks they want.
- We are experiencing more ups and downs than ordinary families. I think we've learned not to take things for granted. We rejoice more over the positive. I know I'm a completely different person now than I was before Ida was born. Ida must undergo an operation to, but there is no reason to be anything but positive for the future, says Kristin.

- Elin never gets any marathon runner, fighter pilot or diver. But it was not me either, smiling Berit.

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