How do we classify and define congenital conditions? There is a new classification that was modified in 2013 called the Oberg, Manske, and Tonkin (OMT) classification. It is good to be familiar with the OMT classification because it is being used most often by surgeons and by individuals who are performing research. The earlier classification systems were based on description or functional limitation, but the OMT classification focuses on the embryological developmental classification. The OMT breaks the embryological developmental classification down into malformations, and then divides it by axis of development, such as the whole limb vs. the hand plate, deformations and dysplasias.
Who is the Congenital Population?
The congenital population refers to a child who is born with a congenital hand developmental difference. Please do not reference these conditions as a "deformity" or by some of the more common names, such as a "claw-hand". It is important to try to use positive terminology not negative terminology. These children are not missing something because they never had a hand, digits, or the separation of digits.
Figure 1. Example of hand development difference.
When studying embryology, the upper limb is fully developed at 8 weeks of gestation. Typically, the upper limb is developed prior to most women even knowing they are pregnant. Many mothers may question, "What did I do wrong?", "How did I cause this?", "Why is this here?", or "How am I going to deal with it?" Most parents have a large amount of guilt when they are dealing with birth anomalies.
Treat the Family
One of the first jobs for both the OT and the surgical team is to reassure the family that the majority of congenital hand differences have no known cause or reason. This will educate the family so that they can start to deal with their guilt that they might have. This is a unique population because these patients are seen by OT at a very young age, typically newborns to six months. The baby and the family will come in to see the OT or the doctor, and they usually have multitudes of questions, "Why did this happen?" "What did I do?" "What kind of limitations are they going to have?"
I have had parents of babies that are a couple of months old come in and ask me, "How are they going to get their wedding ring on their hand?" or "How are they going to be able to put their hair up?" The parents are already thinking ahead about their children. I think one of the biggest jobs for OT is education. You are definitely treating the families when you are dealing with children with congenital hand differences. You are reassuring them that there is nothing that they have done or that they can do to change this at this time. Possibly there are some surgical interventions that may help them as they grow.
Reassuring the patient and the family is important. Educate them that no matter what their hands look like they will be able to do everything they want to do. They might just need to make some adaptations. These children are amazing. They teach me every day how to do different functional activities in ways that I had not thought about.