When Liesje Was Born in 1978, the General Attitude of the Medical World Towards Children

When Liesje was born

Carla Verpoorten, MD

December 2001

When Liesje was born in 1978, the general attitude of the medical world towards children with spina bifida was dominated by the pessimistic report of John Lorber in England. His report described the disappointing results of the early surgical treatment between 1960-1970 of a large group of children with spina bifida.

After the first implant of a shunt by the neurosurgeon Spitz (1956) in Philadelphia, the medical world was enthusiastic. The shunt was developed by the engineer John Holter for his son Casey, a boy with spina bifida and hydrocephalus. The invention of the shunt was a major step towards surgical treatment for babies born with spina bifida and hydrocephalus..

As early as 1957, a group of doctors treating children with spina bifida gathered in London. They were concerned about the unexpected problems with infection and dysfunction of the shunt. This was the start of the Society into Research of Hydrocephalus and Spina Bifida (SRHSB). Doctors realised that surgery could not cure these children since the neurological dysfunction due to the developmental disorder of the spinal cord could not be resolved with surgical closure. The parents and the child, but also the doctor had to learn to accept this reality. Surgical closure and insertion of a shunt were only the first steps in life long care. Indeed, good care implies long term planning as well. Therefore, multidisciplinary teams with a co-ordinator were created with the task of drawing attention to the whole child with all his abilities and disabilities, and questioning the advice of the super-specialists on the functional abilities of each child.

But the pessimistic report of Lorber in 1971 about the results of 10 years intensive medical care shocked the medical world causing many people to lose their faith in lifelong care for these children. Lorber proposed “selective treatment based on selection criteria”. Children with paralysed legs, and who end up in a wheelchair or children with a clear hydrocephalus at birth would not qualify for treatment.

However, the centres using Lorber’s selection criteria soon faced another problem. Some children not treated at birth soon died because of infection or –greatly increased pressure. Other children did not die but often survived with a more severe handicap than at birth: they became blind, spastic, with severe brain damage due to pressure or infection and ended up in institutions.

Some people proposed passive or even active euthanasia for those children who could not be treated or for those children not qualifying for treatment according to the selection criteria. This indicates the attitude in the medical world at that time towards children with a severe functional damage for whom treatment was possible but who were excluded from treatment because the quality of their future was thought to be unacceptably low.

In the book “Love and Loss” parents described life with their children at home or in the hospital, after they where given up by the medical world.

The detection in 1975,of alfa-proteine - a protein, which is present in higher doses, in the amniotic fluid of a mother bearing a child with spina bifida - made prenatal diagnosis possible. Screening of this protein in the blood of pregnant women made detection of spina bifida possible early in pregnancy. Given Lorber’s pessimistic view on the quality of life of children with spina bifida, abortion - in many countries allowed until the 24th week of pregnancy- was often advised.

The advantage of early detection was that abortion at this stage of the pregnancy was still medically and legally acceptable. The ddisadvantage of early detection was that the severity of the defect could not be determined. Consequently, in all such pregnancies abortion was suggested and in most cases was carried out.

Meanwhile, prenatal ultrasound (scanning) was developed too, enabling doctors to determine the defect more accurately. However, spina bifida could now also be detected at a late stage of the pregnancy. A new problem thus arose: spina bifida was detected in the second or third trimester of the pregnancy. The prognosis – according to Lorber – was very poor and without any good prospects and the parents were told to terminate the pregnancy as the child would die anyway at birth or would have no future at all.

But most of these children with spina bifida were viable and sometimes even survived the late abortion, causing another problem. To resolve this, intra-uterine killing of the unborn child was proposed “to avoid unnecessary suffering for mother and child”.

In the meantime (1960-2000) however, medicine had undergone a major evolution as well. New diagnostic possibilities - such as CT scan and NMR scan of the nerve system- and more adapted therapeutic possibilities - such as new antibiotics and an early adequate approach to bladder problems - were used in the treatment of children who had survived despite the pessimistic predictions for the most part due to parents who believed in their child and who chose life for, and with, their child.

These children are now schoolchildren and young adults and are proving that living with spina bifida, although not always easy, is possible and rewarding. Last year, 270 people with spina bifida from all over the world gathered in Toulouse and adopted a resolution to testify that the quality of their life is no reason for abortion or euthanasia.

But their voices are rarely heard. Many in the medical world, and public opinion , continue to agree with Lorber’s pessimistic approach. This erroneous attitude continues to influence new legal texts which relate to late pregnancy termination and euthanasia on new born babies

Indeed, the law itself is influenced by the existing medical and ethical climate. Correct ethical thinking however, should use correct facts: a correct diagnosis, an honest picture on short and long term prognosis, possibilities of treatment that can influence the prognosis, and the results of non-treatment of children with spina bifida.

The core of the whole ‘medical – ethical and legal’ debate since the invention of the shunt 40 years ago, is the quality of a “life with spina bifida ”. But who will determine this quality of life? All too often outsiders: able people for disabled people; , the doctor seeing only the defect at birth but maybe never having seen an adult with spina bifida.

Does our society tolerate people who are different?

Do they get sufficient support from the government? Do they get enough credit from society to live (construct) their own life?

How is a child with spina bifida different from a child with an acquired defect of the spine? Like the 18 month old child paralysed and incontinent after successful removal of a cancer tumour? Or the girl hit by a car on the pedestrian crossing and survived the accident, but was paralysed and became incontinent. An important difference is that they already had a name, a smile, and a position in their family and society.

For this very position in society, people with spina bifida and their parents want to continue fighting. One of these parents, the father of Liesje, wrote a book on Liesje’s life. Anyone wishing to improve society, with a place for all people, should read it. It is a moving testimony of the belief of parents in their child.

Carla Verpoorten

Brussels, 7-12-2001