Today marks Day Six of Congenital Heart Defect Awareness Week. Krueger Hat Trick Foundation will be sponsoring TEN heart patients at University of Maryland Children's Hospital, providing them EACH with a $270 Instacart gift card. This will provide them with the delivery of the essentials that they need the most--food, personal care items, and more--so that they may focus on the needs of their Heart Warrior. (Additionally, we will be delivering yet another batch of Comfort Kits, which provide helpful items for Heart Families such as blankets, toiletries, stuffed animals, coloring books, slippers, and cell phone chargers.)
Here is the story of another Heart Warrior, one year old Jace, as told by his mother Liz.
"Jace was born at Children's Hospital of Philadelphia (CHOP) on 11/20/19. He was diagnosed in utero with DORV, VSD, and severe pulmonary stenosis. At birth, he was diagnosed with Goldenhar syndrome, a rare genetic defect. Fortunately, Jace only spent 4 days at CHOP without needing immediate intervention before he was able to return home to his two older siblings, Carson and Scarlett.
He continued with cardiology visits biweekly. When his O2 dropped significantly, he was sent back to CHOP. On 3/17/20, Jace underwent BT shunt surgery. He endured several complications including vocal cord paralysis, diaphragmatic paresis, and poor PO intake. Jace continued to lose weight and had difficulty eating, which resulted in NG tube placement. After 20 days, he was able to return home.
Two months later, Jace was hospitalized due to low O2 saturations once again. The hospital team thought another surgery may be required. Luckily they were wrong, and once he stabilized, they planned for Jace's discharge.
The night before he was supposed to go home, he had several episodes of his O2 bottoming out, though it was able to increase with repositioning. A sleep study was performed and he was diagnosed with severe obstructive sleep apnea. Apparently, most kids with Goldenhar syndrome have some sort of sleep apnea due to airway changes and underdeveloped structures on one side. We were lucky to have caught it since Jace was not seen by plastics or ENT due to COVID.
Jace was sent home wearing bipap at night on a high setting and is now followed by the pulmonary department. He was able to grow and gain weight at home to prepare for his next surgery.
Jace underwent a successful bi vent repair in Boston on 9/30/20. He did suffer one major complication--a complete heart block--which did not resolve after six days of monitoring. Jace received his permanent pacemaker on 10/6/20, and yet another sleep study was performed prior to returning home. This time, he was diagnosed with mild sleep apnea, and no longer required bipap at night time.
Jace returned home and hasn't sat still since. He has caught up on his developmental milestones and started walking independently at 13 months old. Now, he enjoys getting into everything, throwing balls, chasing after his siblings, and eating! He is still learning what 'no' means and is curious about his environment. Jace is thriving and we are so blessed to share our living miracle. Every day he brings joy to everyone he meets with his baby blues and personality."
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