These are some of the questions parents often ask next and they can receive conflicting and confusing answers. The reason for this is the complexity of upper limb deficiency. Referral and treatment for a baby born with part or all of a limb missing will differ from that for a baby born with an incomplete hand. But in the first instance all babies born with congenital limb deficiencies should be referred to a Disablement Services Centre (or equivalent specialist Clinic for congenital hand problems). This referral should be made as soon as possible - within the first few months. Where the deficiency is spotted on an Ultra Sound Scan prior to birth, parents should be given the opportunity to visit the DSC. Normally referral will be made to the Centre nearest the families home, however, it should be realised that some centres have more experience and better facilities than others. Assessment by a multi-disciplinary team will ensure your child reaches full potential. Ideally this team should be experienced and trained to deal with the special needs of limb deficient children and should include:

Other specialists your child may be referred to, depending on the nature of the deficiency include Plastic/ Reconstructive/ Orthopaedic Surgery for the improvement of function, or of appearance, or both. An Orthotist may also be involved in some cases.

Early referral enables the family and child to become accustomed to the centre and staff. Plans for the child's prosthetic or other care can be explored and a relationship begun. Early fitting of a prosthesis (if indicated) will help with the long term acceptance and ability to make an informed decision regarding limb wearing once your child is old enough. Any treatment you are offered for your child, be it the wearing of a prosthesis/ artificial limb or corrective/ reconstructive surgery, can have two implications - cosmetic or functional improvement. As a parent you will need to decide which of these is more important for your child. It is easy to believe that if an artificial limb is high tech. and cosmetically good to look at it must be the best choice, this is not always the case and parents should be guided by the team.

One of the first functional limbs your child may be offered is a split-hook. This device is not very pretty to look at but is extremely functional. It should be noted that this type of limb is often the one adult patients find most useful, so perhaps perseverance at an early age may be beneficial. It would be nice if our children were allowed to have both a split hook and a more cosmetic working hand. Some centres are still able to offer this, but budget restrictions may not allow this. You will also be amazed at how adept your child becomes at finding alternative methods of doing 'two handed' activities when not wearing their artificial limb. Our Booklet 'A Guide to Artificial Arms' explains the possible forms of treatment in more detail. The Amputee Medical Rehabilitation Society issue recommended standards of care for congenital limb deficiency and parents should be aware of whether or not centres meet these standards.

Click here to view the 'Guide to Artificial Arms' booklet (guidetoartificialarms.pdf 389 Kb)
Click here to view the 'Recommended Standards of Care' guide (standards.pdf 120Kb)
Click here to view the DSC Address list ( dsc_addresses.pdf 58Kb)

Description of Professionals

Consultant in Rehabilitation
As head of the team he/she will have the knowledge/experience needed to assess your child's need. After careful consideration and consultation he/she will decide if a prosthesis (artificial arm) would be suitable and if so when and what to fit. It may not be necessary for them to see your child at every visit but they will reassess at regular intervals.

Prosthetist
If the consultant decides your child could wear an artificial limb, it is the prosthetist's job to measure, prepare a cast and eventually fit your child's limb. They are also often very inventive people and if your child comes across a particular problem/task for which theirartificial limb is not suitable a prosthetist can often suggest or make adaptations.

Occupational Therapist/Physiotherapist
Whatever your child's deficiency an OT or PT can often offer a wide range of assistance. They can suggest exercises and other simple devices to help your child to do day to day tasks. These can range from a simple wrist band to slot in a knife, fork, pencil etc to splinting to correct some functional deficiencies. The OT will also be the person responsible for teaching your child to use any artificial limb. Support and advice can be offered to the staff when your child starts play-school or nursery and when they move on to main stream school.

Orthopaedic Surgeon
Some but not all Orthopaedic Surgeons have specialised in corrective surgery for congenital limb anomalies, and it is a specialist in this work that your general practitioner should find for you. They would generally be a member of a team. Should your general practitioner have difficulty, Reach may be able to help.

Plastic Surgeon
Some but again not all Plastic Surgeons have specialised in hand and finger surgery. Whether an orthopaedic or a plastic surgeon should be consulted will depend on their respective areas of specialisation and their membership of a team. Once you have located an appropriate rehabilitation team, the appropriate referrals should be automatic. Again, in case of difficulty, Reach may be able to help.

Community Paediatrician
This is a Consultant Children's Specialist, with special training in children's development and growth. They may not be a member of the Rehabilitation team, but should be included as they can be extremely useful, having knowledge of local nurseries, schools etc. The involvement of the Community Paediatrician becomes obligatory when a child is likely to require special facilities for education.

Orthotist
where additional or specialised splinting is required.

Ideally, all or most of the above should have had the experience of working together for several years, dealing with at least 5-10 children such as yours each year. Should you live in an area where such experience would be difficult to come by, Reach could, if asked, advise you or your general practitioner where the nearest Centre with such experience might be available for a second opinion. Any decisions and developments should be shared with your local Community Paediatrician. It does sometimes arise that parents, having had contact with a Consultant previously, nevertheless would like to obtain a second opinion but find this difficult to ask for. The most appropriate step under these circumstances would generally be a discussion with their general practitioner, with or without the help of Reach in case of difficulty.