I’ve been ignoring my own blog lately, but with good reason. The last several weeks I’ve been channeling my “inner Matthew” and posting on Matthew’s Journey, in his own words, of course. Matthew is my nephew, son to my youngest brother William and his wife Nikki. In the final few months of anticipation of and preparation for the arrival of their first son, William and Nikki learned Matthew has a rare heart defect, Hypoplastic Left Heart Syndrome (HLHS) with Endocardial Fibroelastosis (EFE).
It’s important to note that congenital heart defects (CHD) are not rare; they affect about 1 in every 115 newborns, but this particular CHD is a bit more rare. While still pregnant William and Nikki flew to Boston to be assessed by the surgeons at Boston Children’s Hospital, to determine if Matthew’s heart had enough formation on the left side to be a candidate for their surgery (he was).
The plan was created. William and Nikki would travel to Boston to have Matthew and then have him treated. Like most babies, Matthew had other plans. He was born early (before they could get to Boston) and taken, via emergency transport, to Boston Children’s hours after he was born. If the HLHS weren’t enough, he was also born with the umbilical cord wrapped around his neck three times and a true knot pulled in the cord. Something tells me he knew it was time to evacuate and get help, as Matthew explained in his post: My First Big Adventure.
Matthew has since had his first of 3 heart surgeries (he had his Norwood Procedure last Tuesday, when he was 6 days old) and could not have done better or be making a faster recovery. If you’d like to follow Matthew’s Journey, head on over and subscribe to his blog. Let me warn you though, he’s a real talker!
I hope you all have had a wonderful Christmas and holiday season and that everyone has a safe and happy 2011. I resolve to pay more attention to MFN for the new year!