Almost like any other siblings
- (© Bente Bjercke)
The Nonslid Tønnessen household is a lively one. Trym (8½ years), Svalin (5 years), and Sigrid (2½ years) all run around trying to play with their little kitten, Lissi. But Lissi does what most sensible cats would do, runs away from annoying little ones, regardless of whether they have congenital heart defects!
"He's hiding under the sofa," says Sigrid.
"Mum, can't you get him?" asks Svalin.
"He must be tired," says Trym sensibly.
As you’d expect from a family with three children between the ages of two and eight, the activity level in this house is high. The fact that both Trym and Sigrid have congenital heart defects makes no difference. Trym has hypoplastic left heart syndrome and Sigrid an aortic stenosis.
Serious situation
When Trym was born, Audhild and Jan Terje's happiness was complete – they had the world's most beautiful little boy. Just two days later though, he stopped breathing and his parents knew immediately that something was very wrong. The doctors quickly confirmed a diagnosis of hypoplastic left heart syndrome. Trym has since undergone three operations and one case of corrective surgery.
"You would think that all the hospital stays and doctors' visits would have left him feeling afraid, but he has enormous faith in doctors and hospitals," says his father. "If he feels pain anywhere he wants to go to the hospital straight away. One time he woke me up in the middle of the night and said, 'let's drive to the doctor's, mum'," says Audhild. Trym charges about with his ball; he doesn't think it at all strange that he likes going to hospital. After all, he can order whatever food he wants there!
Not just the heart
Like Trym, Sigrid was also born with a heart defect. But it wasn't her heart defect that concerned the family most when she was born. Sigrid was born with an extreme fontanelle; her skull protruded out like a halo, covered by just a thin layer of “false skin”. "We hardly even thought about her heart defect during her first days. She cried terribly, and the lack of skin on her head drew all our attention," recalls Jan. Trym was sad that the baby had to stay at the hospital. Svalin thought her little sister was sweet, with a tiny little bonnet on her head, taking no notice of all the tubes, nurses, and general chaos.
"Trym had had his last operation just one month before Sigrid was born. We were so glad that the operation was not one month after," says Audhild. Trym and Svalin stayed with their grandparents in Kristiansand while their mother and father were in Oslo. Audhild and Jan were most concerned about their little daughter having brain damage. Sigrid underwent surgery when she was just a week old, first for her head and then for her heart. Plastic surgery replaced the skin on her head, and the skull bones quickly grew back together normally.
"The doctor said that he had seldom seen anyone who dealt with an aortic stenosis as well as we did," says Audhild.
Two out of three
- (© Bente Bjercke)
Everyday life can have its challenges. Trym has periods of extreme stomach pains as a result of protein-losing enteropathy, and cortisone treatment has inhibited his growth. His arms and legs are skinny and his muscles taut. The doctors have now put him on growth hormones. Trym has the height of a seven-year-old child, one and a half years younger than his actual age. The plus side is his skeleton is also that of a seven-year-old, which could mean that he will grow taller. However, the results will not be evident until at least a year from now. Furthermore, Trym has to face all the challenges that are associated with blood-thinning drugs. He has to take a cocktail of medicines each evening with his supper.
"I take care of it myself," says Trym proudly. "They have tried a lot of different drugs for Trym, and this combination naturally has side-effects," says Jan. Both he and Audhild are amazed by how little international cooperation and guidelines there are in this area, although some progress has been made since Trym was born.
Involved in everything
"For the first four years of his life, Trym was awake five or six times every night. Fortunately, things improved when Svalin arrived," says Jan. "A heart defect is accompanied by a lot of additional diseases, and very little material is available about the gastrointestinal problems, for example. For a while we tried a diet that helped a bit, but it took a long time to prepare, leaving little time to do anything else," says Audhild.
So far there are few activities in which Trym and Sigrid cannot take part. Audhild and Jan try to divide their time equally between their three children. All youngsters need time alone with their parents. "They are delighted when they get mother or father all to themselves," says Audhild.
Brotherly and sisterly love
Like most siblings, Trym, Svalin, and Sigrid, are friends, but they argue a lot too. Trym takes especially good care of Sigrid, and they sometimes tease the life out of Svalin. "A while ago, Svalin asked when she would have to get cut into. She had developed the notion that every child has to get cut into at some point or another. Perhaps that's not so strange, given that both her siblings have undergone heart surgery," says Audhild.
"Trym is used to being around adults. He wants to control things and is very stubborn. He has incredible will power, which is an advantage in many ways, but it is not always so easy for his younger siblings," confirms the mother of three.
Rights
Jan's parents do the babysitting whenever he or his wife need to got to the Oslo University Hospital or for examinations in Kristiansand. The youngsters think that its fun to stay with their grandparents. "The support network is important if you have seriously sick children," says Audhild. "It is important to get financial support so that you can accompany your child to the hospital or doctor. The alternative is that the parents have to call into work sick, even though it’s not actually me who is sick. Overall we have got what we've needed, and we have had incredibly fine doctors who have seen what a burden we have faced, including financially, to have two children with heart defects."
The Nonslid Tønnessen family has been assisted by a social worker in getting the help to which they are legally entitled. "We get by just fine, but we also think about how it will be for Trym and Sigrid in the long term. We have been very fortunate, even though both Trym and Sigrid have serious diagnoses. We have learnt an incredible amount. And we've also got the world's most beautiful children," smiles their mother proudly.
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