Counselling

The flowing is based on an article by Ian Fletcher, published in the Journal of Maternal & Child Health, December 1982.

After the birth of a limb deficient child, careful counselling is advised and early referral to a Disablement Service Centre (DSC) is strongly recommended whether prostheses are, or are not recommended it is advisable for the children to be seen frequently at these specialist centres so that complete independence may be achieved.

The birth of a malformed baby is a shattering experience for any parent and for the obstetric team involved, one of whom will have to break the news to the mother and father. Whatever is said at this moment will leave an incredible memory, many mothers have said how important it was for them to see and hold the baby as soon as possible after the birth. This definitely reduces feelings of alimentation and rejection and helps to encourage bonding.

Doctors working in DSC’s are familiar with a wide variety of limb deficiencies in addition to amputees. The experience gained permits a fairly accurate forecast for the future of any new patient. It is advisable for both parents to be present for the first consultation. A detailed history is taken and the baby examined. Often, it is possible at this time, to allay any doubts about hereditary factors being responsible, a matter of real concern to parents.

Limb Prosthesis
If a limb prosthesis is deemed necessary, the approximate date for the fitting together with a general outline of the future programme, is stated. Many parents have complained that they have been given widely differing advice from a variety of people prior to attending the DSC. At the centre the young patients are followed through from infancy until adulthood seeing the same doctor at every attendance. This has the great advantage that not only is the limb condition treated, but emotional adjustments can be foreseen and supported; and a very real bond can grow between doctor and patient. Children with single limb deficiencies manage very well at mainstream school and even children with multiple limb deficiencies can also be successfully educated in mainstream education. The child’s educational needs can be discussed with the staff at the centre.

Causes
Very few limb deficiencies are hereditary and genetic counselling can be offered for parents that are concerned. The author has seen nearly 800 patients born with limb anomalies. Only about 1% were hereditary, e.g. slit (lobster claw hands or feet); 12% were due to thalidomide and the remainder were sporadic. Of the latter it is of interest to note that NO close relative was similarly affected.