To have, or not to have – a disabled child
By Jussi Konttinen
Miika, aged a year and a half, gestures with his arms and coos in his father’s lap. His eyes are observant.
Miika is living the life of an ordinary small child: he sleeps, eats, and plays. He especially likes to swing in the yard.
However, he is also special. His legs do not move, and they probably never will. He suffers from myelomeningocele (MMC), a congenital defect, in which the spinal canal is not closed. The condition has left the lower part of his body paralysed.
He also has hydrocephalus - a malfunction of the flow of cerebrospinal fluid. The fluid does not flow normally from the brain, for which reason a valve has been placed behind the ear, which takes the liquid into the abdominal cavity along a subcutaneous tube.
Miika’s MMC is more difficult than usual. In the first year of his life he spent five months in hospital. Immediately after birth he underwent surgery linked with his condition. At the age of three months there was an attempt to straighten his back, but the titanium rods placed in his back came through the neck. Morphine was administered, and Miika had to spend a month in a full-body cast.
“Miika was depressed then. It is clear that his psychological growth slowed down”, says his mother Pauliina Paukkunen.
Miika might never have been born.
His disability was detected prenatally in an ultrasound exam. Increasing numbers of parents opt for termination of pregnancy in such situations.
The National Institute for Health and Welfare (THL) revealed the latest information about its deformity register on its web site. According to the figures, half of pregnancies involving a foetus with MMC end in an abortion.
Down’s syndrome is a more common defect than MMC.
In 2008 56 per cent of women who were pregnant with a foetus diagnosed with Down’s syndrome opted for a termination. That was a new record, but advance information acquired by Helsingin Sanomat indicates that in 2009 the figure was 59 per cent.
Tests do not reveal all cases of Down’s syndrome, and some of them are born without warning. Consequently, a different kind statistic is also possible: last year, 90 per cent of parents in Helsinki and Uusimaa who knew they were expecting a child with Down’s syndrome, chose an abortion.
Permission for an abortion on the basis of congenital defect is given by the Pregnancy Termination Board operating under the auspices of the National Supervisory Authority for Welfare and Health (VALVIRA). In the mid-1990s the board got just over 200 applications in a year. Now it gets between 350 and 400.
The increasing average age at which women become pregnant has led to an increase in defects. However, the biggest reason for the growth in the number of terminations has been an increase in knowledge.
In 2007, legislation on foetal screening came into effect, under which all municipalities are required to offer expectant mothers the same studies. Implementation became mandatory from the beginning of 2010.
It is likely that the new act led to a 75 per cent increase in the number of late term abortions, conducted after the 20th week of pregnancy in 2009.
Pregnant women are entitled to an ultrasound examination in the early stages of pregnancy, a test that measures the possible swelling of the neck of the foetus, a blood test, and a mid-pregnancy ultrasound.
The tests have other purposes than the mere detection of deviations. Ultrasounds are used to estimate the duration of the pregnancy, the number of foetuses, and their location – all important information in keeping tabs on pregnancy.
The ultrasound also detects physical abnormalities, such as MMC.
Blood tests and measuring neck swelling have been established purely to determine a foetus’s chromosomal deviation. Extra chromosomes are an indication of mental disability – usually Down’s syndrome.
Termination of pregnancy was not an option for Miika’s parents, Pauliina and Ilkka Paukkunen. They had decided that already when they were expecting their first child, Saara, who is now three years old, and who was born healthy.
“If we had terminated the pregnancy, it would have been the same as if I would have told my brother that it sucks that you were born”, says Ilkka, whose brother has Asperger’s syndrome. a neurological disorder.
The Paukkunens nevertheless wanted to undergo the foetal screening. “Thanks to the tests, we knew that we should go to the Women’s Hospital, where Miika got the best possible care right away. In addition, we decided to give up our plans to refurbish our old house. Now we are building a new one that takes into consideration the needs of someone who uses a wheelchair”, Pauliina says.
They are still upset about the attitude taken by some health care professionals. Under the rules, the personnel are not supposed to try to influence the parents’ decision, but the Paukkunens feel that pressure was put on them to have an abortion.
“We were shocked at what we ended up facing, when the child that was coming was not healthy. I have felt that we were made to feel guilty for having a disabled child”, Pauliina says.
According to the Paukkunens, four people involved in administering the tests felt that a termination would be the best of a number of bad options.
“With these findings you have the right to an abortion”, the first doctor had said. “Are you sure?” he asked when the parents aid that they did not want a termination.
“Think about it some more”, said another doctor after hearing the parents’ decision.
“This is a terrible case. His legs are tied in a knot”, said an employee taking the sonogram at the Women’s Clinic, according to Pauliina.
A surgeon at the Children’s Hospital was the first to explain in practical terms what life with an MMC child would be like. It would not be easy, but with the help of the right equipment, the child can live a full and balanced life. It was a comforting message.
“People trust doctors. The question arises, how many decide to have an abortion after hearing the kinds of comments that we did”, Pauliina says.
As the availability of foetal testing has increased, the quality of the studies themselves has improved. For instance, a heart defect can be detected more easily than before.
Ultrasound tests detect serious problems, such as kidney disease, but they also find les serious ones, such as clubfeet or a cleft palate.
The current testing methods detect 85 per cent of the chromosomal abnormalities that cause Down’s syndrome. The test only indicates the risk. A positive diagnosis requires samples of the placenta and amniotic fluid.
The problem is that tests do not reveal how serious the disability of a Down’s syndrome foetus is.
Ten per cent of pregnancies involving Down’s syndrome end in miscarriage or infant death. However, children with Down’s syndrome can be in physically good health. The most intelligent ones can learn to read, live in assisted living facilities, and do simple work.
In addition to foetal diagnostics, corrective medicine has also developed. Increasing numbers of seriously disabled children can be kept alive. For instance a serious heart defect can be fixed with 15 operations.
Organisations for the disabled have launched debate on screenings.
“We are concerned if the message is that developmentally disabled people are not welcome in this society”, says Mari Saarela, the acting executive-director of the Finnish Association for Persons with Intellectual Disabilities.
“As I have had plenty of dealings with people with Down’s syndrome I know that there are plenty of worse fates in the world than being born with an extra chromosome. The life that a Down’s child can expect is a good one, and can be quite rewarding”, says Heikki Seppälä, head of research at the Finnish Association on Intellectual and Developmental Disabilities.
Some parents and researchers suspect that the ultimate aim of the screenings is to save money. For instance, the report of the working group drawing up the act pondered the effect that terminations would have on costs.
Education material on screenings put out by THL claims that a third of admissions into children’s hospitals involve congenital defects, deformities, and genetic illnesses.
Screenings can create the illusion that all types of deviation can be controlled. If a foetus gets a “clean bill of health”, parents might sigh with relief that the child is healthy.
“This is not how it is. The result simply means that nothing out of the ordinary was detected in a screening or an ultrasound”, says Veli-Matti Ulander, head physician responsible for screenings at the Helsinki and Uusimaa Hospital district.
Sonograms do not detect all structural faults, and some of them can cause serious defects.
Cerebral palsy appears only after birth. In addition, any one of us can become disabled at any time during our lives.
How can we take it?
And will screenings ultimately lead to conditional parenthood, in which a child is loved only if he or she lives up to certain standards?
It is time to give voice to the silent party in the foetus debate. What do the majority of those parents who are told of a serious defect in the foetus, who have decided not to have an unwanted baby have to say?
The grief felt by someone who has lost a child is a real taboo, says Tiina Mikkonen. She terminated her pregnancy two years ago because of the serious abnormality of the foetus. She says that a termination can cause a crisis that lasts for years. Nobody chooses a termination lightly, but people prefer not to discuss the matter.
“Every one of us would have wanted to hold a living child in her lap. Some have had lengthy treatments against childlessness. We have rejoiced over a positive pregnancy test, but then it turned out that things were not well.”
When Mikkonen became pregnant she asked her husband Tomi what he thought about screenings.
He wanted all of the possible tests. “I couldn’t deal with being the father of a disabled child”, Tomi said.
Although the Mikkonens knew what the screening was for, the result came as a shock.
There was a big deviation in the foetus’s abdomen. Further tests showed that it was a big hernia of the umbilical cord. Most of the internal organs were outside the abdominal cavity. If the baby were born alive, it would have to undergo demanding surgeries. At least the two first years would largely be spent mostly in hospital.
When the hernia continued to grow the Mikkonens decided on a termination. “I didn’t want my child to suffer”, Tiina says.
After getting authorisation for a termination in the 15th week of pregnancy, Tiina took a pill. The next morning she went to the maternity ward and got medication to induce labour. A half hour later she gave birth to a stillborn baby girl.
“I looked at her for a moment. I counted the toes and fingers. She was a complete little person, but there were two bellies on top of each other. I stroked the smooth cheek and said goodbye.”
The autopsy also revealed a hernia of the diaphragm. She would not have been able to breathe on her own. The prognosis would have been very poor.
“I felt tremendous grief, but at the same time I felt calm. When I saw with my own eyes what a big change was involved, I knew that the decision was the right one.”
Mikkonen had a second positive pregnancy test three days before the original due date for the first. Their son Luke, who is now a year old, is a healthy boy, but during the pregnancy, the two dared not believe it.
“It wasn’t until a couple of weeks before the predicted date of birth did we start buying baby supplies.”
Tiina feels that she is the mother of two children.
“One child is missing from our family. We do not have concrete memories of her, but she will not be forgotten. The grief did not hit me until I was at home with Luke.”
The possibility of getting a disabled child haunts everyone who decide to have children.
Down’s syndrome screenings began in Finland in 1977. Ultrasound tests came into general use in the 1980s. Before that, disabled children were a surprise, or then the pregnancy ended in a miscarriage.
Now everyone who is expecting a child is expected to decide whether or not to take part in a screening, and prepare to decide on the fate of a foetus that deviates from the norm.
In practice, parents often get an ultrasound simply to get a look at the baby, its gender, and how it moves its limbs.
“People do not understand what is involved. The parents should be informed of the screening in connection with the first visit to the maternity clinic, but in early pregnancy, there are a million other things to deal with”, says Dr. Jaana Leipälä at THL.
What deviation is serious and what is mild? Ultimately it is the parents who decide. That is the stated purpose of the screenings: reproductive autonomy. Parents have the right to get information of the child that they are expecting, and to make decisions concerning the child.
Even though a decision on a pregnancy is as personal as it gets, it seems to involve everyone else as well. Passions fly on the chat boards of baby magazines.
Some writers feel that parents who opt for a termination are murderers who think only of their own convenience and the hope of getting a perfect child.
Others say that parents who keep a disabled baby are selfish fanatics who do not want to make a difficult decision on their own, and prefer to let the child suffer.
No matter what the parents decide, they can be left feeling that they constantly need to justify their decision to themselves and to others.
The choice can seem undreasonably difficult. There is little time. Many feel that they are not given enough information or support.
According to guidelines by the Ministry of Social Affairs and Health, parents should be given an appointment with an expert doctor within three days of confirmation of an abnormality. Parents are also supposed to get psycho-social support.
These recommendations are often not realised. “Further studies involve a heredity specialist, an obstetrician, and if necessary, a specialist in paediatrics. We do not have psychological counselling, but we give contact information for support groups”, says head physician Ulander from the Helsinki and Uusimaa Hospital District.
Both the Mikkonens and the Paukkunens emphasise the importance of peer support.
A nurse at the foetal study unit told Tiina Mikkonen about a website where people who have opted for termination can offer each other support. She still visits the page daily, and actively attends meetings of an organisation of families of deceased children.
The Paukkunens found information about MMC on the website of the Finnish CP Association. It is through the association that they got in contact with families for whom disability is part of their everyday lives.
“We met a six-year-old boy with MMC, and we got plenty of support. All parents should be given the possibility of getting to know a child who suffers from the disability in question. It gives a completely new point of view on the matter”, Pauliina Paukkunen says.
She is now involved in an organisation for parents of special children.
But what about Miika? How does his future look?
A year ago a doctor said that Mika might never learn to sit. Now he sits.
A physical therapist exercises the boy, and the parents hope that before summer he might learn to crawl and could get into a wheelchair, which would give him mobility.
At some stage, Miika will undergo a procedure to straighten his back.
There are nevertheless many aspects of his everyday life that are complicated. For instance, urination takes place through a catheter. Pauliina Paukkunen would like to be Miika’s paid caregiver, but her local authority has indicated that the boy’s disabilities are not sufficiently severe for such an arrangement.
The parents would like Miika to have the same as their first child Saara: to have a favourite hobby, get friends, and feel accepted.
MMC is a disability of mobility. It is not an intellectual disability, unless the valve which relieves the pressure of the fluid on the brain malfunctions. Hopes are that Miika might start school at the age of seven – at first with a personal assistance.
Nowadays, people with MMC increasingly go to work normally, live independently, and are able to establish families.
A positive attitude and rehabilitation are very helpful.
Helsingin Sanomat / First published in print 30.1.2011
JUSSI KONTTINEN / Helsingin Sanomat
jussi.konttinen@hs.fi
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| 1.2.2011 - THIS WEEK |
 To have, or not to have – a disabled child |
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