“The Miracle Family is a true and inspiring story of profound challenges and adversity confronting one family and how God sustained them throughout. Gabriella, the oldest child, was born fourteen weeks premature weighing one pound and ten ounces. Doctors gave her a fifty percent chance of survival and warned of brain bleeds and serious developmental impairments. Elijah, the youngest child, was diagnosed with a large tumor at 17 weeks gestation. By 22 weeks gestation, two medical specialists had suggested terminating the pregnancy due to rapid tumor growth. After being given a fifty percent chance of survival, Elijah was born at 34 weeks with a football-sized tumor. Eleven months after Elijah’s tumor was successfully removed, Ivana, a 37-year-old healthy mother of three young children, suffered a debilitating stroke. This book recounts the pain and heartache of medical challenges and describes the wondrous triumphs and victories wrought by faith. Ivana and Michael Gibbons have been happily married for nearly 18 years. They have three children who are real blessings in their lives: Gabriella, Rafaella, and Elijah. Ivana is a graduate of Florida Christian University who now is engaged full time as a homemaker. Michael is a graduate of the University of Notre Dame and the University of Miami School of Law. Michael is a partner at a large Orlando commercial law firm. Ivana and Michael are raising their three children in the City of Orlando, Florida. The idea for this book originated with Ivana and her desire to share with others near and far the true story of the medical challenges faced by our family and the powerful way God responded to our prayers. The authors pray that you will be as blessed reading this book as they have been writing it.”
A Resource for Parents Confronting an SCT Diagnosis
By Michael R. Gibbons
“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. About halfway through our 17 week journey, I did discover a wonderful oasis of knowledgeable support on the internet. There is an SCT support group on Yahoo that has approximately 45 members from all over the world. Most of the members are parents or grandparents of SCT babies. Some of the babies survived and others did not. Each of these members, however, has dealt with the many challenges and issues surrounding an SCT baby and each member is very supportive and helpful to parents struggling to cope with an SCT diagnosis. If you are the parent or grandparent (or other relative) of a baby diagnosed with SCT and would like to join the Yahoo Support Group, please email me at firstname.lastname@example.org.
Many thanks for taking time to read or even share the above post. For similar posts and more about myself and friends, please see the below links! God bless you! Ivani Greppi.
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