The granddaughter Fiona is off to bed, and I have some quiet time, so here's a little of her history.
She's nearing four, and at the risk of sounding like any grandparent, she's bright, insatiably curious, mischevious and full of fun. Active enough to exhaust a NFL linebacker, on the go from the moment she wakes at 6am onward. It's something of a miracle, and I don't use that term ever.
When the first ultrasound was done in my daughter K.'s first trimester, she called me very distraught. Very. It was determined that the forming baby had an giant omphalocele. In brief, that's the condition where some of the organs are outside the body, usually in the abdomen. It can include liver, stomach, bowels. It also means that the organs like the lungs and heart do not develop normally, they are not being held in place by an intact abdomen. They cannot survive a natural birth, a C-section is done. They have a high mortality rate after birth, and over 50% have other issues like cardiac and pulmonary defects. They also have a high chance of genetic defects.
In the next months, my daughter became an expert on the subject, using the research skills that made her a math whiz in school. Fiona was born with a portion of her liver extruding from her abdomen. Seattle Children's Hospital took over her care after birth at UW Medical Center. There are about 5 children's hospitals in the US that use a particular protocol called 'paint and wait', vs. a fairly quick closure of the opening. They put a dressing on it and let the body slowly draw the organ(s)back in, this method has a much higher success rate in many instances.
Omphalocele children often have an extended stay, weeks or even months in a NICU, Fiona was there a matter of a few days, and she was home in less than a month. The next year plus were a busy time for Kate and her husband Drew; caring for the opening while it healed and the liver slowly retracted. By month three or so she was entirely tube-fed, first through a naso-gastric tube, later they put in a port in her abdomen to her stomach. A result of this, common among this group, is oral aversion. Sometime the child has to be tube fed for more than a couple years.
Fiona hasn't had a tube feeding now in 8 months. Today she gobbled cereal, snacks, a cheeseburger, ribs, mac and cheese, corn on the cob and ice cream. Grandpa is piling on the calories.
I'm glossing over a fair amount here; but on the scatter graph of how well these kids do over time, how many or few complications they have (small bowel obstruction is a common one, cardiac problems another), Fiona is an outlier.....the SCMC docs say they have no experience with one like her. Observing her in her daily life, you'd never know what her prognosis was before she was born.
She is a little miracle.