Elijahs Story - A Resource for Parents Confronting an SCT Diagnosis

A Resource for Parents Confronting an SCT Diagnosis

"For You, O Lord, have delivered my soul from death,
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 impairments.

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.

If you have any questions, suggestions or comments or otherwise want to talk, please email me at michael.gibbons@lowndes-law.com.