The Appointment Chair We All Sit in as Parents of Medically Complex Children
We all know a chair. We’ve probably encountered the chair multiple times, I know I have. Sometimes we get good news in the chair, sometimes we get bad. I’ve laughed in the chair and I’ve cried. I’ve begged for people to hear me out and I’ve had doctors respect me while sitting in the chair. I’ve prayed in the chair and I’ve lost my faith a few times in the chair.
My first surreal encounter in the chair was when I took this picture. This is your view. It’s not always this extreme but you feel helpless every time you have to sit in a chair and get this kind of scenery.
Easton was just a few days old when I got the news that he had severe pulmonary hypertension and had to be put on a jet ventilator with nitric oxide. I did not know I would sit in that chair for 31 days watching my child fight for his life every day before moving on to the next chair.
The next chair was at Brenner’s Childrens Hospital in the ED. You see, had it not been for one of Easton’s NICU nurses, he probably would have died after coming home. I had pediatric experience, but I was no doctor. I was a scared first-time mama of a NICU baby. I was being “over-protective” said two pediatricians. My baby’s breathing was fine, maybe a milk allergy. But I had my first mom gut instinct that it wasn’t. So I sent a video to one of my son’s old nurses and asked her opinion. She said to get him to the hospital as soon as possible. I did. By time we got him there, he was turning colors. He was desatting in the 60’s and 70’s and I sat in a chair while watching a nurse rock my baby back and forth to get him to calm down and breathe. We found out Easton had aspiration pneumonia; he was put on thickened formula and sent home.
I thought that was my last time in the chair, but it wasn’t. For months after that, I went chair to chair in specialist’s offices. I had a few good ones here and there. We had an exceptional pediatrician who listened every time I said, “Dr. M., I really think they’re missing something here.” Orthopedics, pulmonology, genetics, cardiology, ENT, gastroenterology, neurology — he already had all the specialists by time he was nine months old and had went through multiple tests and procedures.
I started to think maybe it was all in my head until one day I was called in to sit in the chair, only to find it would be the most heartbreaking day of my life. It was a spine specialist who saw my child’s X-ray and immediately said, “He needs to be tested for MPS.” It was a simple urine test they said would take two to three weeks. If that was normal, our next step would’ve been the WES test.
But it wasn’t normal, so while I sat in a chair in the neurologist’s office on November 8, 2017, I saw her and Easton’s complex care doctor come in. I knew.
I knew that the extensive research I did, all the worrying and everything I had to put Easton’s body through, I was about to get a diagnosis but a heartbreaking one.
His neurologist said, “Everything looked normal, until…until his GAG urine screen which showed extremely high levels of dermatan and heparan pointing to a diagnosis of MPS II-Hunter syndrome. A blood test later confirmed the diagnosis.
I remember the doctor looking over at my mom who came with me, asking, “Do you know why your daughter is so upset? Easton has a disease with no cure. He will only have a life span of early teens, if that. He will get enzyme treatments for the rest of his life but this will not stop the neurological decline.” I remember his complex care doctor looking at me and then giving me a hug and saying, “I’m so sorry, we will do whatever we can to make his life comfortable.” He was only 10 months old.
I sat in a rocking chair that night and rocked him to sleep, singing you are my sunshine, but every-time I hit the words, “Please don’t take my sunshine away,” I bawled. I sat in the chair that day and grieved my son as if I had already lost him.
The next chair was at UNC Children’s Hospital where one of the most knowledgeable doctors in MPS practices. I sat in that chair and learned that yes, Easton had MPS, but all of his symptoms were not correlated and he believed he also had something else. That was like a stab in the heart. So my child having a terminal illness was not enough? I felt guilt, horrible guilt. We proceeded with more testing which did not find anything.
More and more chairs in between while Easton had his port-a-cath and G-tube placed, more specialist appointments, ED visits and hospital admissions. One after another after another… each explaining how rare and complex my child was.
In August 2018, I took Easton to a clinical trial in Pittsburgh. This was it. This was Easton’s chance at life. I sat in the chair going over all of his history. He was young, he was involved, he needed this cure. I sat in a chair thinking my son was going to get gene therapy and save his life. But the call later came that he did not. He was actually too involved for a pharmaceutical company to take the risk of him.
More and more chairs in between while Easton had surgeries, testing, more specialist appointments, ED visits and hospital admissions. One after another after another… each explaining how rare and complex my child was.
I’ve had to sit in that chair so many times.
It never gets easier.
I’ve had to do it multiple times in the past few months, watch my child not act like himself, watch him breathe heavy or act in pain.
I’ll have to sit in the chair for the rest of Easton’s life, but I’ll continue to do it for my superhero who needs me.
He needs me to be strong and he needs me to advocate for him.
To all the parents who have sat in the chair, are sitting in the chair or will sit in the chair, I am praying for you and I am here for you.
Advocate like no other. Love beyond measure. Take care of yourself.
The chair is no comfortable place to be, but home is where my heart is.