A Resource for Parents Confronting an SCT Diagnosis
"For You, O Lord, have delivered my soul
my eyes from tears,
my feet from stumbling,
that I may walk before the Lord
in the land of the living."
Psalm 116: 8-9
The day an expectant parent receives a diagnosis of SCT (sacrococcygeal
teratoma) for their unborn or newly born child is a dark and painful moment
in time. Frequently, as in our case, the occasion of the diagnosis is
a much anticipated regularly scheduled ultrasound test to determine, among
other things, the gender of the baby in utero. In other cases, the mother
or baby in utero is showing some sign of distress or abnormality and an
ultrasound is ordered to identify the cause of the distress or abnormality.
In still other cases, the diagnosis is not made until the baby is actually
delivered. In any event, parents are ill prepared to learn that the baby
they already love and cherish is suffering from a rare (1 in 40,000) fetal
tumor called a sacrococcygeal teratoma.
In our case (and I have subsequently learned in other cases), the critical moment
of the initial diagnosis and announcement of the adverse news to the expectant
parents is poorly handled by the attending physician (even high-risk specialists
such as perinatologists). The occurrence of SCTs is sufficiently rare that even
specialists are not always well informed and knowledgeable about the latest advances
in the treatment of SCTs and the critical prognostic indicators (e.g. relative
vascularity, composition and degree of internal component of the tumor). Perhaps
as a result, the initial diagnosis is frequently (in the fetal SCT context) accompanied
by a very pessimistic prognosis and a suggestion of termination of the pregnancy.
In our case, the initial perinatologist painted a very bleak picture and failed
to communicate the importance of the favorable prognostic signs evident with
Elijah: the tumor was primarily external, not overly vascular and (at that time)
had a significant cystic component.
There is no disputing that SCTs diagnosed in utero are frequently fatal. Reliable
statistics for such a rare condition are difficult to come by; the figure of
50% survival rate (for SCTs diagnosed in utero) is, however, seen frequently
in the medical journals. What we found missing in our physician's initial handling
of the diagnosis was any sense of the possibility that the condition did NOT
necessarily condemn our unborn child to a premature death or a life with significant
It is my sincere hope that this website will serve as a beacon of knowledge and
support for parents struggling to cope with an SCT diagnosis. Personally, I found
the experience very isolating and found myself struggling to find fellow travellers
over this lonely, stressful and frightening road.