12 - Family issues

Summary

Impact of initial diagnosis

Why us?

After 9 months of pregnancy, most parents expect to leave hospital with their little “bundle of joy” and never anticipate their child having any kind of medical condition. Heart problems are often deemed to be something “which happens to other people.” The impact on the whole family is so great that it takes years to come to terms with the devastating effects, although some parents do not realize initially that they are affected; they are running on automatic pilot and are trying to make the best of what life has thrown at them. So how does it affect different families, personalities, and cultures to find out that their child has been diagnosed with velo-cardio-facial syndrome (VCFS)?

Those diagnosed early with VCFS, after being born with severe heart defects such as interrupted aortic arch (IAA) or tetralogy of Fallot (TOF) may nowadays have the benefit of early intervention in their medical, social, and educational needs. However, the impact on the family on finding that their newborn is going to need a lot more care and attention than other children puts a huge strain on everyone involved. Everyone's needs at this time are different.

The mother

The baby's mother, recovering after the birth, often feels guilty and thinks that maybe she did something wrong during her pregnancy.