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Suggestions regarding psychological adjustment to pregnancy loss.From: Gary (jafar6@optonline.net)Mon Mar 29 22:05:10 2004
I have a very unfortunate family. The parents are in their early 30's. They are South Asian (Indian) professionals and have one healthy 6-year old daughter. The next pregnancy, delivered last year was an infant with CHARGE association, who died at 7 months from complications of hydrocephalus. Ventriculomegaly was found prenatally but later in pregnancy. The infant was delivered by cesarean section. The chromosomes were normal. Geneticists at Yale said the condition was probably not hereditary. I was not involved with the family at the time of the neonatal death. The couple said today that the daughter took the loss with difficulty. I didn't inquire as to what that meant, but will ask when I speak to them again. 3 days ago, the couple returned for a level II ultrasound with their 3rd pregnancy. Findings included: decreased skull echodensity, very short and bent long bones and "S"-shaped ribs with a small chest. These findings are probably diagnostic for osteogenesis imperfecta type II, which is usually lethal, and survivors are always debilitated. The couple is considering termination pending confirmation of my ultrasound findings by the International Skeletal Dysplasia Registry. We met today to make an ultrasound video to send to the Registry. I told them that this condition is considered genetic with a fairly low recurrence risk (5%) and not related genetically to the first disorder. They seem to understand the prognosis but wonder what they can do to prevent birth defects in the future. I informed them that the recurrence risks for both disorders is small, and that they could take folic acid, and have early prenatal diagnosis. They are most concerned about their daughter's adjustment, saying that she is sad to be an only child and that coming close to having a sibling twice will upset her greatly. I didn't think much about this until the long drive home (around the Interstate 95 detour). Now I wonder if there is anything I could do to help the family deal with the loss and their probable upcoming termination of pregnancy. I plan to ask our perinatal social worker and those experienced with grief counseling for advice. I will also ask the parents when I speak to them again about their concerns for their daughter. We don't seem to have a mechanism in place in our hospital-based practice for dealing with grief and loss in those families who are considering termination. Would anyone on the list have suggestions as to how to ease this family's adjustment to the second loss? Thanks in advance,
-- Gary Kleinman, MD MFM/Genetics Bridgeport Hospital Bridgeport, CT
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