Our son, Palmer Nicklaus Strong was born 4/1/17 in Austin, TX. We received the Heterotaxy Diagnosis 12 weeks into my wife Kristen's pregnancy. We tried to research what Heterotaxy meant for us and our soon to be baby, but the more we read, the more questions we had. The Dr.'s and Cardiologist's, although aware of Heterotaxy, couldn't truly ease our fears or answer all of our questions, because as you know about this condition, there are just so many unknowns, especially in utero. Palmer was diagnosed with Dextrocardia, AVSD, and PA.
Upon his arrival, we quickly realized it was much much worse. His first echo revealed TAPVR and MAPCAs. Palmer also had bi-lateral SVCs which have proven to be difficult in his current situation on ECMO. Palmer is now 43 days old, 33 of these have been on open chest VA ECMO at Texas Children's Hospital. I could have never imagined a 43-day period this tumultuous and difficult, and my wife and I are praying that we can have more.
Palmer was given 0% chance of survival in Austin, and since having surgery at TCH, we have continually been told he has very little chance of survival. We continue to fight because Palmer continues to fight. We have created Heart Strong to honor our son as well as all of the babies and parents that are living with a Heterotaxy and CHD diagnosis. We honor Palmer by honoring others. We will never stop fighting! The logo represents the backwards heart that many of our babies have as a result of this syndrome. The HS represents Heterotaxy Syndrome, and the missing pieces in the letters represent the pieces that may be missing or broken within our children. But as a whole, our children are still Strong! Heart Strong!
Tomorrow--May 4th--is Heterotaxy Awareness Day, and similar to Sammy's heart surgery during CHD Awareness Week, he's right on time to promote awareness of his primary diagnosis and the reason for his Ladd procedure tomorrow. Heterotaxy--is literally a "Different Arrangement" of internal organs and a range of accompanying birth defects, including one of the more common ones, intestinal malrotation. The Ladd procedure will untwist his intestines and loosen/divide any abnormal bands (Ladd bands) of tissue contributing to the malrotation. As a bonus, Sammy gets an appendectomy to prevent future misdiagnosis since his appendix is on the left instead of right side. #TheWorksPlease
But my grandson, Sammy, is much, much more than his heterotaxy diagnosis! Just one year ago, before he was even born, a doctor told his mama his condition was "incompatible with nature," but that was old news! Not that long ago few options existed for babies born with more serious forms of heterotaxy. However, not so today! I hope you'll take a minute to meet 7 month old Little Sammy Braveheart (my favorite nickname for him!) Sammy's a bouncer and a snuggler and soft muslin baby blanket lover. He only flashes his big baby blues and broad toothless smile for big brother, Jack...until he sees Mama...then he flashes his big baby blues and broad toothless smile for Mama...until he sees Dada....who always seems to cause his great big cupcake cheeks to erupt in the biggest, widest, brightest, almost one baby tooth grin ever seen. He just plain melts our hearts... and I bet he'll melt yours too. Sammy loves making new friends and you can follow his mama's blog at www.wholeheartedlyblessed.com
#LittleSammyBraveheart
