I am running the New York City Marathon for Miles for Miracles/Boston Children’s Hospital in honor of my daughter Emily and my niece Madison.
* Emily's Story *
We found out at our 20-week ultrasound that Emily would be born with a bilateral cleft lip and palate, and in that moment we didn’t know if we would recover from that news. We came to Boston Children’s Hospital, met with their prenatal team, had in-depth ultrasound and MRI, and leaving that appointment my heart felt whole again. I knew we were in the right place.
After Emily was born, we met Dr. John Mulliken and he put our beautiful girl back together. She had 4 major surgeries in her first year of life - 2 of which were over 8 hours long and landed her in the ICU on a morphine drip, having trouble breathing on her own. The nurses and staff on those surgical floors got us through those hospital stays. They changed our lives. They pulled us out of some of our darkest moments and for that I don’t think I could ever repay them.
Dr. Mulliken and Emily’s cleft team—dental, otolaryngology, speech, and social work/OT at Children’s have changed Emily’s life.
Dr. Mulliken has patients all over this world and no matter their financial situation or access to healthcare he takes them in. His work and dedication to his patients is inspiring and we are eternally grateful to him.
Emily is also a patient in the Neurosurgery department. At 6-months of age, while going under anesthesia to have her lip stitches removed, the doctor recommended that we see a specialist and was diagnosed with macrocephaly. We me Dr. Scott and he kept a careful eye on Emily over the last few years.
Something that most don’t know, Boston Children's has dormitory-style rooms in the hospital, that parents can stay in while your child is in the ICU at NO additional charge. They have parent support staff to help secure those rooms at the hospital, and if needed hotel rooms at a discounted rate that are close by. They are there for anything you need while your child is in their care to help lessen the load of everything you have going on.
* Maddie's Story *
Around 4 months old, we noticed Maddie was clenching her right fist and not using the right side of her body as much as the left. We spoke to her pediatrician and they referred us to Boston Children's Hospital. After several evaluations with ortho and neurology, we were informed that it was likely Maddie had suffered a stroke before/during/shortly after birth. At 13 months old, we received her official diagnosis after confirmation with a MRI. She had suffered a perinatal arterial ischemic stroke and had cerebral palsy, most notably right sided hemiparesis.
Two months after her diagnosis she started the first round of constraint induced movement therapy (CIMT) through Children's. During each CIMT round, her left arm is casted above the elbow for 4 weeks, enabling her to focus on/strengthen her right arm/wrist/hand. She has done four rounds of CIMT, and we've seen tremendous gains each round. When she first began therapy she was barely able to open her right hand, and now she is able to grasp/hold onto objects, etc.
We are so fortunate that we have access to the incredible team at the Boston Children's Stroke Center, including her physiatrist, neurologist, and physical and occupational therapists. Every day she continues to make progress, and we cannot thank her team enough for providing her with the care necessary to conquer her diagnosis.
Boston Children's understands the importance of training the next generation of top pediatricians and nurses, so they can continue to provide the best, most innovative care possible to kids.
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