 | TOFS: Tracheo-oesophageal fistula support |
TOFS is a national support group and registered charity which exists for the
purpose of helping the families of babies born unable to swallow. Oesophageal atresia and tracheo-oesophageal fistula 1 in 4,000 babies is born with this life-threatening defect. As yet, there
is no known cause, but the baby may be born with a gap in its foodpipe
(oesophageal atresia), or with a section of its foodpipe connected to its
windpipe (tracheo-oesophageal fistula). Most TOF babies are born with both of
these defects, which are both potentially fatal. Some are born with additional
physical defects of the spine, heart, kidneys, anus, and radius bone. This condition is an accident of nature. The mechanism of separation of the
foodpipe and windpipe is very complicated and it is not surprising that it
should go wrong occasionally. Major surgery ensures that most TOF babies do survive nowadays, but
unfortunately problems can persist for some years. TOF children are prone to
chest infections, and most have abnormal swallowing mechanisms. This is
something they have to learn to cope with as they get older, but in their early
years it can be very stressful and worrying both for them and their parents. Cause At the very beginning of a pregnancy the windpipe (trachea) and the
foodpipe or gullet (oesophagus) are just one single tube. Between the 23rd and
the 28th day of the pregnancy (at a time when most women are not even sure that
they are pregnant) this single tube divides into two, the windpipe leading to
the lungs, and the foodpipe leading from the mouth to the stomach. If something
goes wrong with this division, as it does in one pregnancy in every three
thousand, the baby is born with oesophageal atresia and tracheo-oesophageal
fistula. Atresia means "no way through"; the foodpipe has a gap
between its upper and lower segments, so that nothing can pass through, not
even saliva. The fistula is a connection between the foodpipe and windpipe, which,
according to its position, either lets food or acid stomach juices into the
lungs and allows air into the stomach. Treatment Enormous strides have been made by paediatric surgeons since the first
successful operation in 1939. The outlook for children born with this
malformation is now very good indeed and a baby can expect to become a
completely normal adult. In most cases the gap in the food pipe is only short, and a surgeon can join
both ends together and remove the fistula in a major operation during the first
few days of life. However, if there is a long gap, a join-up operation at this
stage is not possible. A tube is inserted directly into the stomach for feeding
purposes (a gastrostomy). Through this tube the baby receives all its
nourishment until the join-up operation. The foodpipe may be opened in the neck
to allow saliva to escape and food to enter, an oesophagostomy. Babies born with this problem tend to be chesty for their first few years of
life, and have an easily recognisable cough known as the TOFS cough or
"bark", which appears with time. Some babies may experience
short-term swallowing problems, due to a narrowing at the site of the operation
due to natural healing processes. This can be dealt with by a surgeon, who will
gently stretch the foodpipe if necessary. Mealtimes are traditionally associated with enjoyment, leisure, and
relaxation, as much as the appeasement of hunger. But, imagine a child choking
on his or her food every mealtime every day for a year or two, or three, to get
an idea of what life can be like for the families of some TOF children. TOF is not thought to be genetic, but if in doubt seek advice from a genetic
counsellor. TOFS TOFS is run by parents, for parents. The group's national headquarters is
Nottingham, whence information and newsletters are sent to new parents, members
and professionals in the medical world, both in this country and abroad. A
national network of volunteers visit in hospital, take calls from worried
families, and try to help as best they can. Inevitably, such a group relies
heavily on fund-raising. The aims of TOFS are to: - promote contact between TOF families
- share management problems and solutions
- collect information which will assist families with the daily care of
their TOF child
- raise funds for research and to help hospitals buy specialised equipment
- promote the spread of information about the management of TOF children to
interested professionals.
Organisation And Activities TOFS has a nationwide network of volunteers, all of whom are parents of TOF
children. They take calls from worried families, make hospital visits, liaise
with professionals, and arrange local meetings of TOF families. Information, monthly newsletters, a twice-yearly magazine
("Chew"), and an annual magazine are sent from group headquarters to
new parents, members, and professionals, both in this country and abroad.
Contact is maintained with sister organisations in other countries. A databank of helpful information on matters such as feeding problems, tube
feeding and financial assistance, is maintained at group headquarters, and a
video has been produced which explains the condition and the problems suffered
by TOF children. Correspondence groups are organised, and local meetings held in some areas.
National conferences are organised once every two years. Each child in the
group receives a birthday card. A card and gift is sent when a child has to
spend any length of time in hospital. Although mutual support is the group's main function, fund-raising is
undertaken to support its own work, to help hospitals buy specialised
equipment, and for research work. Both Sheffield Children's Hospital and The
Hospital for Sick Children, Great Ormond Street, London, have benefited from
the group's fund-raising activities. TOFS is open to all parents of children born with oesophageal atresia and
tracheo-oesophageal fistula, any oesophageal disorder, and related defects. For any further information, or to make a donation, please contact:
Tracheo-oesophageal fistula support
St George's Centre
91 Victoria Road
Netherfield
Nottingham
NG4 2NN  01602 400694
 http://www.tofs.org.uk/
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