When Molly F’s care got tangled up in state government regulations, H.A.L.O. CAN was able to help.
|Molly and Kaitlin share a happy moment.|
“We made sure this child got the care she was entitled to under the letter of the law,” said Rebecca Dalpe, a law partner at Foster and Eldridge and volunteer with H.A.L.O.’s Children’s Advisory Network.
The story began when Molly and her twin sister Kaitlyn were born at 34 weeks. Molly was diagnosed with CHARGE Syndrome, a complex, life threatening genetic condition. Molly is legally blind, wears hearing aids, and receives nutrition through a feeding tube. Over a 13-month period, she underwent five surgeries. Eventually she was able to transfer from the hospital to New England Pediatric Care (NEPC) in Billerica, MA for short-term, skilled nursing while awaiting further surgery.
“The doctors wanted to get her up to full strength before taking her trach(eotomy) tube out. It was important to do this as soon as possible so she wouldn’t miss the developmental window for speech,” said Bob, Molly’s dad. Unfortunately, it took longer than they had hoped. Frequent aspiration put Molly at very high risk for pneumonia and twice in three months she experienced respiratory distress and had to be rushed from NEPC to the hospital.
Molly’s pediatric otolaryngologist, Mark A. Vecchiotti M.D. wrote that it was imperative for Molly’s health and safety that she be closely observed by skilled medical staff to be well enough to proceed with surgery and to preserve her best chances to develop speech.
So the family was shocked when the state’s Medical Review Team (MRT) refused to approve an extension of Molly’s stay at NEPC.
MRT told Bob that he could take Molly home or place her in medical foster care. “Our goal was always to take Molly home,” said Bob, “but it was critical to avoid setbacks until the doctors could do the trachea reconstruction.”
Bob said the family would have been hard-pressed to give Molly the intensive care she needed at home because of Molly’s complex issues and caring for twin sister infant Kaitlyn.
|Molly is home with her family.|
So Rebecca worked with the distraught parents to obtain support from Molly’s surgeon and to file an appeal that highlighted Molly’s fragility and her need to be in good health for the difficult surgery.
The effort was successful. Molly got the care she needed, had the surgery on December 18th and is now happily home with her sister and parents.
“Molly would not be at this point without your help,” Bob said in a note to Rebecca and H.A.L.O.
“As parents we were afraid. We knew Molly would need lots of support in the future, and we didn’t know the system. I don’t know if Molly ever would have had her surgery without help from Becky. Thank you,” said Bob.
Volunteer lawyers at H.A.L.O. CAN help families understand and file forms at appropriate times, obtain legal advice in matters affecting their child’s care, and provide emergency legal services when necessary.