On April 17, 2017 I will be running the Boston Marathon as part of the Miles for Miracles program in honor of our daughter Brigid. Brigid is our miracle and my patient partner. The funds raised will be dedicated to the Transplant Service at Boston Children's Hospital.
The story through Brigid's eyes:
My name is Brigid. It's been a long first year of life. And quite a fight to get here. Let me tell you my story......
On July 28, 2015 my mom went to see her OB because she noticed less movement. To everyone's shock I was born a couple hours later via emergency c-section and was critically ill. I was intubated and required transfusions of platelets and RBC's for weeks. Shortly after birth we found out this was all the result of CMV (#CMVawareness #STOPCMV), a very common viral illness. I spent 79 days in the NICU. I also battled for my life again about 2 weeks into my stay when I had an enterobacter sepsis. I rallied from that too. The CMV also stole some of my hearing and caused some calcifications on my brain. The doctors said time would tell and I would show them what I can do. After 79 days I finally made it home with my mom, dad and my big sister Rori. Without a doubt, that was a truly momentous day for all of us.....
At discharge, my liver and spleen were still very affected. My parents learned this is very typical with CMV and we all expected with time things would improve. Well that wasn't the case and in December 2015 my liver functions began to worsen. More information was needed so two days before Christmas I was admitted to Children's Hospital and underwent a biopsy. The next day my parents found out the scarring was extensive. I would not survive unless I had a transplant. There are no words to describe the sadness felt by all that day. I was able to get home to have my first Christmas with my family. But I continued to rapidly decline. My abdomen was becoming more enlarged each day as a result of ascites. As my liver function continued to worsen, I became more jaundiced and I began sleeping most of the time. In the periods when I was awake, which weren't often, I was moaning in discomfort. The transplant team felt it was no longer safe for me to be at home and on New Year's day I was brought to the ER, right after I was baptized. My liver was failing. It was clear there wasn't much time and I was quickly becoming very, very ill. Things are a bit of a blur but on January 4th I was listed for transplant. On January 9th, just five days later, my parents received a call. An angel had arrived and was about to save my life. I rallied through surgery and spent 39 days at Children's Hospital in Boston recovering. My determination and spirit shined through again and I was able to return home and finally begin to grown and thrive. Since then I have had a couple bumps along the way but have stayed the course and continued to rally through.
I would not be here if it weren't for the amazing multidisciplinary team-- transplant surgeons, hepatologists, ID specialists, NP's, nurses, dieticians, pharmacists, social workers and so very many more. They have seen me and my family through some of the very darkest hours and in the months since transplant they have enabled us to navigate all of the challenges we have encountered while also recognizing the rewards and opportunities that have been bestowed on me by receiving the gift of life through organ donation. There are no words to describe how grateful we are to all of the people that have been involved in my care.
Tonight my mom sits writing this from across the room while I lay in the ICU at Children's Hospital. Unfortunately, (once again on New Years day) I faced one of the hurdles of life post-transplant, what one doctor on my team described as a "common seasonal respiratory virus in a very special little girl". And although I can see the fear in my parents eyes I can also see the reassurance every time somebody from the transplant team or one of my other specialists walks into the room. I actually believe they care for me as they would their own child (although something tells me they would give me my own bedroom and I plan to speak to mom and dad about that one.) Because of their ongoing care (and my determination) I hope to not be in here for too long. (I have a lot of mischief I need to get into with my sister back at home.)
My family created a video to capture my first year in honor of my birthday. At the very end there are some thank you's. You can see the multitude of other amazing clinicians and services at Boston Children's Hospital that have enabled me to grow and thrive: https://www.youtube.com/watch?v=jkJXM4RBNi0&list=LLKaQCgvcB28YammqSTan15g&index=1
And so today, I wonder if I can ask you to take a minute to consider somethings. First, if you are not an organ donor, maybe take a moment to think about it, read more, and consider what it might mean to offer the gift of life. Somebody out there made a decision to do so, and that person's decision saved my life. https://registerme.org
Second, my mom will be running this year's Boston marathon to support the Transplant Program at Boston Children's Hospital. She is doing this in my honor and I will be her patient partner. She has committed to raising $12,500 and informed me that if she doesn't hit this goal my piggy bank will need to take the hit.
So I want to ask if it's possible to consider making a contribution to support her (and our family) on this mission to support Children's Hospital and specifically the Transplant Program? Something amazing will have happened if even one more person becomes an organ donor or a few more dollars are raised because of my story..... Which by the way, if you wondered, now reads..... "to be continued".