Thank you for visiting my fundraising page!
As many of you know I am fundraising for the 2014 Boston Marathon for MGH's Pediatric Palliative Care team. As you also probably know, I have worked as a pediatrician in the Newborn ICU at Mass General for nearly ten years now. Over the past couple of years I have had the pleasure of working side by side with our small but expert Pediatric Palliative Care team.
What is Pediatric Palliative Care? Pediatric Palliative Care is complete care for patients and their families facing life threatening illness or injury. In our case, at MGH, it is a pediatrician and a pediatric nurse practitioner who have had advanced training in palliative care medicine and consult on our sickest and most complicated patients. They work closely with social workers, chaplains, child life specialists and music therapists and together they get to know families and their sick children extremely well. Our Pediatric Palliative Care team helps parents think through complex decisions that they need to make regarding the care of their child. They help with pain and symptom management in children who are suffering. They address spiritual as well as family social issues and provide families with resources to get through what will probably be the roughest patches in their lives.
This year I’m running on behalf of a very special baby named Tom. I met Tom and his parents, Liz and Chris, the day he was born. Liz and Chris had learned, during what seemed to be a normal pregnancy, that their baby had a large defect in his diaphragm, the big breathing muscle that separates the lungs from the abdomen. This meant that his bowel and abdominal organs had slipped up into the chest space and his lungs would be underdeveloped. Sometimes this defect can be mild and sometimes it can affect the lungs so severely that the baby cannot survive. Liz and Chris knew that their little boy had a severe form of this malformation. They lived far away from a hospital that could manage their baby so transferred their care to MGH where we have pediatric surgeons, a newborn intensive care unit and the life support machines Tom would need in order to have a chance.
When I met Tom a few hours after birth he had a breathing tube in place and the ventilator was assisting his own breaths. He was working hard. Our surgeons had just placed central lines and we were all watching and waiting to see which way he would go. Would he remain stable or would he worsen and need ECMO (a lung bypass machine)? When Liz came down to meet her beautiful boy for the first time I stood at the bottom of his bed and my heart sank. As a doctor who has taken care of babies like Tom before, I knew the odds were not in his favor. As a mom I could see the infinite love these parents had for their baby as Liz reached out to Tom, almost afraid to touch him. He was theirs, but could they keep him? Could they beat this?
The next few days and weeks were tough. Tom did have to go onto ECMO and as the days passed he did not get much better. The MGH Pediatric Palliative Care Team started seeing Tom and his family soon after birth. They met with Liz and Chris regularly and in Liz’s words, “They were a much needed bridge between us and the doctors and staff and were instrumental in helping us get through Tom's long hospital stay… they helped my husband and I process our feelings and emotions over our son's illness, and were literally godsends for helping us not only survive but live through this endeavor.”
After a few days on ECMO, after the lungs had a little time to rest, our pediatric surgeons repaired the defect in Tom’s diaphragm. The next days were still rough and I can’t even begin to imagine what each hour of each day was like for Liz and Chris. The not knowing if tomorrow would be better, if Tom would make it off of ECMO. He did. And as the weeks went by, Tom slowly got a little better.
The weeks turned into months and Tom faced more challenges. His lungs were doing ok, but having been so sick for so long caused other problems. Tom couldn’t eat by mouth and couldn’t even hold down tube feeds. He required more surgery, more feeding tubes, more days in the hospital.
Liz remembers during this time, “When my older son would come visit from Maine, [the Pediatric Palliative Care team] would help us find activities for him to do so he would not be bored or feel ignored. They hunted down resources and texts that helped us talk to our son, Jack, and be open with him while still keeping information appropriate to his age. [The Palliative Care Team] and I brainstormed multiple times on potential therapies that might help Thomas. They checked in on me when my husband had to return to work in Maine throughout the week and when I had to return to work, they would come check on Thomas and visit with him while I was in Maine. At Christmastime, they found us housing for the holidays and events that Jack could enjoy, such as the Chocolate Bar at the Langham Hotel or walking through Boston Commons to see the ice sculptures. Their services kept us sane when we felt pulled apart by events beyond our control.”
After 4 1/2 months in the hospital Tom went home. A virtual marching band played as we all walked Tom, his dad and the wagons of their stuff to the door. Chris beamed with the sheer joy of this day. Tom was going home, they all had made it through.
Tom made it over a nearly insurmountable hurdle. He still has smaller hurdles to jump. His lungs remain very fragile. He does not yet eat by mouth and he needs physical and occupational therapy to help with his development (babies can get pretty far behind when they are so sick for so long). Pediatric Palliative Care now just touches base with Tom’s family when they come for medical appointments. They are however always there for Tom, Chris, Liz and Jack and will help them face whatever punch they are thrown.
Palliative care is mostly funded through philanthropic gifts. Insurance doesn't really reimburse for what they do, though families who have experienced the care that our Pediatric Palliative Care team gives would argue that their service is invaluable.
As I lace up my shoes for another 20 plus mile run on a 15 degree March morning to leap over dirty snow banks, I do so with great pride, knowing that I am raising money for a cause that means so much to me and to families of babies like Tom. Many thanks for your support -- and don't forget to forward this to anyone who you think might want to donate too!