Sunday the 24th, we made another mini-pilgrimage. For some time, we wanted to experience St. Patrick's Church in downtown Columbus - it's administered by the Dominican Friars who are in charge of advancing the cause of canonization for Little Margaret. We took a chance to go to mass with just Jane, and afterwards, to visit their shrine to Blessed Margaret of Castello. They have several relics, including a large piece of her uncorrupt heart, which they venerate every Wednesday, in hopes that she would intercede for another miracle.We know God grants them, and we're just hoping that Caroline might be granted one.
The next day was a phone call at noon with the Doctor of pathology at Nationwide Children's who performs autopsies. This is one of the many decisions that weighs heavily on our hearts as we plan for the very different set of events that will happen after Caroline's birth. Many people obtain an autopsy for the purposes of confirming a diagnosis - something we're blessed to actually have through the amniocentesis. Sometimes an autopsy can advance the medical field - however, we're not sure whether that's among the purposes that God has for Caroline's life. Nationwide Children's does have a very large "tissue bank," where some of Caroline's tissues could be stored for future studies of all kinds. While we're unsure if any of the more than millions of samples in the bank come from confirmed Meckel-Gruber babies, Caroline could be the first that they've seen in person.
In and of itself, the disease is not widely studied. In part, Katie (our genetic counselor) educated us how rare it is, and how complicated the gene-identifying can be - there are many variations of several different genes. Jessica has one variation, Tom has another and, because Caroline got both recessive genes, she has both variations. The doctor who does the autopsy is also a professor at Ohio State's medical school, so those results would likely be shared with students, if not studied directly by those students. Overall, we have some more thought, analysis, and prayer to complete before we decide on how we treat Caroline after her passing.
After the call we then headed downtown for a late afternoon visit back at St. Patricks - this time with Father Stephen Alcott, the pastor, to learn more about Blessed Margaret. Fr. Alcott was also able to bless a medal of Little Margaret for Jessica. Since there's nothing that can be done medically, the only thing two parents can do is hope God intercedes with a miracle.
On Friday, we ended the week at a fish fry with some friends, and ended up back at their house. There, they gave us a beautiful gift from friends - a family sign, that includes all of our names, most notably Caroline's. It's the first tangible way we've had to keep her name in our house, as a part of our family. It was such a special gift and we were just speechless.
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