The day after Avery Toole was born, her doctors found a heart murmur during a routine exam. Her mother, Cheryl, is a nurse in the Neonatal Intensive Care Unit at Children's Hospital Boston, and knew that this was a common occurrence in newborns. But an echocardiogram revealed that she had a serious and rare heart defect called hypoplastic left heart syndrome. Her only chance for survival was immediate open-heart surgery.
Cheryl wrote about her daughter's scare in a previous issue of Dream, and she's happy to report that, almost three years later, Avery has grown into a feisty toddler with opinions on almost everything. She's been closely monitored by Children's cardiologists since her first operation and had a second one when she was 6 months old. Avery was due for a third procedure last May, but a pre-surgery MRI revealed that her left ventricle and valves were continuing to grow—a highly unusual and positive development. If her heart continues to grow, she'll be able to have a bi-ventricular repair, which would return circulation to the left side of her heart.
Doctors don't know what complications Avery will have long term; the life-saving operations she's had are so new that the oldest living patients who've had them are still teenagers. But she has "zero limitations" according to Cheryl. She loves dancing, just started taking gymnastics and is fully on target for all growth, cognitive, motor and language skills. She's also developing quite a Boston accent: When asked why she takes medication, she replies, "For my boo-boo on my haht."
When Tricia Coblentz was four months into her second pregnancy, an ultrasound revealed a large, solid mass growing from her baby's mouth. At Children's Hospital Boston's Advanced Fetal Care Center, an MRI confirmed that her baby, Gracie, had a benign oral teratoma—a rare type of non-cancerous tumor that was growing down into Gracie's throat. Fearing that her windpipe would be blocked if the tumor got any bigger, Reza Rahbar, MD, and his team rushed Gracie to the operating room right after she was delivered and removed the majority of the mass. She weighed just 2 pounds, 9 ounces after the removal of the tumor, and stayed in Children's Neonatal Intensive Care Unit for three months. Her struggle was featured in the July edition of Children's News.
Gracie turned 4 last October, and she's had more than a dozen operations, including one to remove the remaining bits of the tumor from her mouth and one to reconstruct her windpipe. She has some hearing and speech problems caused by nerve damage from the tumor, so she's in a special education pre-school and wears a hearing aid. Her protective big brother, Kyle, who's 6, is quick to translate for her when people can't understand what she's saying, but her speech difficulty will be greatly improved after speech therapy and her next surgery.
Gracie's impairment hasn't affected her demeanor one bit, according to Tricia, who says her daughter is "always beaming and smiling." She loves playing with her dog, Scruffy, riding scooters with Kyle and playing dress-up. She's also got her ABCs down pat, just learned how to write "mom" and can spell her own name.