Why I "Extra Life"
Some have asked - "Why do you do this 'ExtraLife' thing?" For kids like my Grand-nephew Cyrus. He will soon celebrate his 6th Birthday (in October)! This would not have been possible with out Monroe Carell Jr Children's Hospital (A Children's Miracle Network Hospital). Who knows what amazing things will happen for him THIS year!
Below is a short synopsis from his Mom (my niece):
Cyrus’s 20 week scan showed nothing of concern, and we learned that Cyrus was a boy developing normally. By 28 weeks, we discovered that he had a “constellation of defects” that pointed with giant arrows to some kind of genetic disorder. I had a condition called polyhydramnios. This happened because Cyrus has micrognathia, a congenital defect in which the chin is too small for the facial structure and causes swallowing difficulties. By 30 weeks gestation, the amniotic fluid level was far too great to safely carry Cyrus, and I had to have an amnio-reduction procedure at Vanderbilt in order to avoid amniotic fluid related complications. It was during this that we chose to also take extra fluid in order to determine whether there was a genetic cause for Cyrus’ many defects.
• Recombinant 4th Chromosome
• Heterotaxy with Right Isomerism
These two diagnoses are the umbrella terms for the multitude of medical complications that Cyrus experiences. Among these are a seizure disorder, tracheomalacia, bilateral colobomas on the iris and optic nerve, submucosal cleft palate, hypotonia, polydactyly, an atrial septal defect, Ebstein’s anomaly, an unusable stomach with gastroparesis, a bi-lobed liver with hyperbilirubenemia and giant-cell hepatitis, chronic lung disease, malrotated intestines, irregular kidneys, hypothyroidism, bilateral inguinal hernias, and global developmental delays.
MONROE CARELL JR CHILDREN'S HOSPITAL (Vanderbilt)
Cyrus was born by emergency Cesarean section on October 22, 2013. He had an APGAR of 2. The NICU had already been alerted about his condition, and we already had a team dedicated to each of his systems. The entire medical staff there were attentive, supportive, and collaborative with us regarding his care and treatment. There was no stone left unturned; I truly believe it was to their credit that my child, for whom the chromosomal anomalies should have been a death sentence, is alive to celebrate his 6th birthday on the 22nd of October.
Cyrus is just one of MANY children being helped by CMN Hospitals nationwide - so let's do what we can to support them and the children/families they help!