Frances Swaine, partner in the Human Rights department, was recently instructed to represent parents who sought to refuse serious and invasive medical treatment for their seven month old daughter (“A”) in the face of opposition from the doctors of a Hospital Trust.
Philip Havers QC and
Sydney Chawatama of
1 Crown Office Row acted as Counsel for the parents.
Bone marrow transplant
The hearing was listed before Holman J in the High Court (judgment handed down on 18 July 2007). The court was invited to exercise its inherent jurisdiction in respect of children to determine whether it was lawful and in the best interests of A for a
bone marrow transplant ("BMT") to be carried out in an effort to cure A's auto-immune condition,
haemophagocytic lymphyhistiocytosis ("HLH").
HLH, a condition which occurs in about 1 in 50,000 live births, is a genetic defect in the immune system and has the effect that a viral infection triggers an abnormal and massive overproduction of the body's scavenger cells (macrophages and histiocytes) which invade and literally eat into vital organs such as the liver, bone marrow and brain. When the condition first becomes active, it may respond to very strong drug treatment but left untreated it is invariably fatal.
Previously painful and distressing treatment
Baby A had already been very ill. She had eventually responded to the available drug treatment after 8 weeks in intensive care during which the treatment she received, though the best available, was described as "prolonged, painful and damaging" and caused immense distress to the baby. However, without BMT it was medically certain that she would die, and probable that she would die within the next six to12 months.
The medical evidence as to the prospects of the BMT being successful was described as offering a 50% prospect of a lasting cure.
Given A’s previous suffering, her parents feared that she would not survive the painful and invasive procedure of BMT. Furthermore, they expressed their grave concern about the various other potentially painful and debilitating side-effects of BMT. In A’s particular case one of the most serious side-effects was a 95% likelihood of infertility.
Parents' views
In light of these risks, A's parents did not wish her to undergo the BMT procedure. The mother said
"The problem is, I do not share the [doctors’] optimism. Our option guarantees her quality of life right now …. I don't believe she will survive. We will lose her along the way." She said "I could consider a BMT if the survival rates were higher or she had not gone through what she has done. … For my daughter it is much less than 50%, and she will die a horrible death. In the short term she has an excellent quality of life."
Both committed Christians, they had strongly in mind the distress already suffered by A during her previous period in intensive care as well as the near-certainty of infertility and the possibility of other side-effects, even if the treatment were successful.
However, the mother also stated,
"putting our faith to one side we still think that the proposed treatment is too harsh for our daughter. On balance, we would rather take the quality of life she has right now, be it for weeks and months, rather than for her to endure…treatment and prolonging her suffering."
The father echoed this evidence and said
"I am so much concerned that if she had to go through it again she will not be able to live. She will die. I might agree if the percentages were higher … We would rather see her go through the process of death than go through the suffering of BMT and still die."
While they respected and had always fully co-operated with the treatment provided for A by the hospital, they did not wish to see A’s distress repeated. The judge summarised that both parents
"made quite clear that their faith in God is complementary to their trust in doctors".
In contrast, the Hospital Trust, acting through its medical staff, was very much in favour of A undergoing the treatment (as was A's guardian, appointed for the purposes of the proceedings).
Judgment
In giving his judgment Holman J praised the parents, stating that “they both gave oral evidence with dignity, courage, clarity and humanity”.
Following a carefully reasoned argument the judge ordered that it would be lawful and in the best interests of A to undergo a BMT. The order was given on the preconditions that A was well at the time, that there was approximately 50% chance of the procedure succeeding and that a sufficiently close match of donor was used.
The judge applied very careful consideration to the views and opinions of both the treating doctors and the parents, the latter having particular value in view of the amount of time spent with the child and the intimate knowledge of how the child reacts.
In summarising his opinion at paragraph 70, Holman J stated:
"If a BMT could only prolong by a relatively short period her life; or if it would leave her alive but probably seriously impaired (e.g. significantly brain damaged) then I would or might take a different view. But in my view a 50 per cent prospect of a full, normal life (even though infertile) when set against the certainty of death before the age of one or one and a half, does in this case outweigh all other considerations and disadvantages."
Both 1 Crown Office Row and Leigh Day & Co acted on a 'pro bono' (or free) basis in this case.
For more information please contact
Frances Swaine on 020 7650 1200.
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