Our first son, Glenn III, was born September 16, 2002. Like any parent, it was a day that changed the rest of our lives. He was born without incident and was beautiful, and we were thrilled to take him home and start our new life as a family of three. Throughout the several months after Glennie was born, we had noticed a few strange things about him, but being that we were brand new parents and that his doctors never seemed very concerned, we dismissed the issues. They were things like how Glennie seemed to really breathe hard from his belly and how by 4 months he couldn't lift up his head. At his well-baby appointment, the doctor said that Glennie was just slow in developing and told us to give him some more tummy time to strengthen his neck muscles. Glennie hated tummy time and cried the entire time, but we believed it was for his own good. He also began to sweat when he nursed around that time as well.
When Glennie was 6 months old, we took a trip to New Jersey to visit Glenn's family, and after taking one look at him, Glenn's parents knew something was wrong. A few days into the trip, they convinced us to take him to the Emergency Room at the Children's Hospital of Philadelphia. Once we got there, the doctors knew right away that something was wrong as well, and Glennie was admitted. He lacked muscle tone and was not meeting his milestones.
Throughout the next year, there are some details I remember with absolute clarity and some I don't remember at all. I remember the morning after Glennie was admitted, a doctor named Dr. Finkel came in to talk to me. He was the head doctor on the Neuromuscular Clinic, and his special interest was in Spinal Muscular Atrophy. I don't really remember all that he said, but basically he did say that although the final diagnosis was not made yet, Glennie most certainly had Spinal Muscular Atrophy, type 1, the worst kind. He said usually babies with type 1 don't make it to the age of 2. I was alone in the room at the time Dr. Finkel came in, as I had spent the night there with Glennie. The next thing I can remember from that time is being with a group of people in the hospital room. I know Glenn was there, Glenn's parents, some relatives, and also a few friends from church, and I remember we were all sobbing at this grave news, huddled together knowing that Glennie would die before he had barely even begun to live.
The next year was spent in and out of the hospital. At first, Glennie had to get a gastric tube put in his stomach, as it wouldn't be long before he would lose his ability to swallow. He lost this ability shortly after the tube was placed at about 7 months of age. He never was able to hold up his head or roll over. He could move his hands, feet, fingers and toes and the muscles in his face, and that was all. Such is the nature of SMA, it robs children of the ability of movement and eventually the ability to survive.
Glennie was diagnosed in March of 2003. Over the spring and summer, we spent more time in the hospital than out of it due to surgeries, a colon blockage, and respiratory viruses. Even a cold could be deadly to Glennie, as he had no muscle strength to swallow or to cough up any secretions. One simple cold or virus could cause blockages in his airway and would cause partial collapses of his lung. He would need to be intubated so that he could recover and would have to be slowly weaned from the ventilator, and this process often took months.
From August to December of that year, we were able to spend a miraculous five months at home. Glennie was staying well and although the disease is progressive, he was doing well with our home care nurses and with Glenn and I taking care of him. He received numerous medications and feedings through his G-tube, as he could not take anything by mouth. He received respiratory treatments every 4 hours, which consisted of using an in-exsufflator to pull secretions out of his airway and then suctioning them out. He wore a BiPAP for naps and to sleep at night. Glennie's lungs and weak respiratory muscles worked hard to breathe every day, so the BiPAP machine provided his lungs some rest as he slept by helping him breathe. It also helped rest his lungs if he was sick and wasn't intubated.
A couple weeks before Christmas of 2003, I was awakened in the wee hours of the morning by shouts of our night nurse, Pat. "GLENN!! AMANDA!!" she yelled urgently, twice, before I realized what was going on and leapt out of bed. Glennie was in dire straits. His O2 and heart rate were dropping fast, and Pat was able to get him stabilized as Glenn called 911. One of many fast and furious trips to the ER was made, again, this time by ambulance. Yet again, we waited in the ER with family, wondering if this was going to be the day, wondering how many times in their life a parent can do this, can watch their child, their baby, struggle for life and breath.
That was one of many times Glennie was able to be stabilized, and one of many times we were able to breathe a shaky, temporary sigh of relief; temporary because we knew that unavoidable day was going to come.
Glenn, Glennie, and I spent our Christmas there at Children's Hospital of Philadelphia, our little family of three. Once again, we were in and out of the hospital that winter and spring, and were able to go home yet again at the end of April 2004.
On May 6, I knew that day that something wasn't right with Glennie. He seemed tired, and he had seemed tired since we had been discharged from the hospital at the end of April. He was struggling that day, and by late afternoon the nurse and I were rushing him back to his bedroom to get him started on his O2. As our nurse Angela worked at one side of Glennie's crib, I stood at the other, talking on the phone to one of his doctors from CHOP. As I stood there on the phone, I watching Glennie's numbers plummet once again. I told the doctor I had to hang up and call 911, and she told me to keep her posted. This was the first time in my life I have ever called 911. The paramedics rushed to our apartment, and Glennie was loaded onto the gurney, where I distinctly remember one of the paramedics strangely asking me if Glennie was blind. I think she was taken slightly aback by his very bright blue eyes. We rushed Glennie out of the apartment.
I followed the paramedics and Glennie out of the apartment, and gave Angela a quick hug, as she was going to stay behind and finish her required paperwork at the end of her shift and lock up the house. I walked behind the gurney, and everything almost seemed surreal. I noticed the kids who lived in the apartment below us had come out onto their porch and were watching what was going on. The medics loaded Glennie into the ambulance, and as they did, the bottom of the gurney hit the bottom step of the ambulance, jolting the gurney. I noticed that Glennie did not move. I climbed into the front seat and waited as we prepared to get going. I noticed that it was almost 5 o'clock, according to the clock on the dash. We did not go to the ER at CHOP, as there was not enough time. Glennie just needed to get to the nearest hospital. At some point during this time I had called Glenn, and Glenn and his parents were en route, their phones glued to their hands.
Once we got there, the medics were performing CPR on Glennie as we rushed in. Once in, they got him into a room that became so flooded with medical personnel that some were asked to leave by the doctor in charge. I was taken to a small family waiting room where I met Keva, the social worker. I will never forget her name as long as I live, nor will I forget her beauty and her gentle spirit. I told her about Glennie as we waited and silently prayed. It wasn't long before the doctor came in and gently and sadly told me they were doing all they could and still had some things to try. She left and Keva asked if she could pray with me. We did, and silently in my mind I asked God to take away Glennie's pain, to not let him be afraid. I wanted to be in there with him so that he wouldn't be scared, but I knew I couldn't.
The doctor came back in. With tears in her eyes, she told us they did what they could, but that Glennie was gone. At this point, my mother-in-law had arrived at the ER and raced into the room. "He's gone? HE'S GONE?!" my mother-in-law screamed, as we fell into a heap on the waiting room couch, sobbing hysterically. I cannot even explain that moment, that day, where the sky fell down on top of us.
I was allowed to hold him one more time if I wanted, and I said yes. They cleaned Glennie up a little bit, and I was allowed in the room, the room where Glennie quite possibly breathed his last breath. I sat in a chair and held his body as people began showing up. My father-in-law, and Glenn, who ran into the room frantically and in a panic in his softball gear, only to find out Glennie was already gone. Glenn's sister Sarah came in, as well as our Pastor Joe and our old friend Shari. Shari has known Glenn and his family for a very long time as the mother of Glenn's best friend, Jim. We all stayed for a while, and it was decided that Glenn and I should be the first to go and that our family would do whatever was left to do there at the hospital.
The rest of the day was numb. We went to stay at Glenn's parents' house, as Glenn and I did not want to go back to our own apartment with Glennie's now empty room. I remember we went home and turned on Survivor, our favorite show, just for some mindless entertainment and distraction from the day, but we were pretty much numb to everything. There is not much that can be said at all on the day your child dies.
Glennie died on a Thursday. We held his memorial service that Sunday, which was Mother's Day. We held his burial the next day, on Monday, as I did not want to bury my son on Mother's Day.
A few weeks later, my mother-in-law told me that she knew something was horribly wrong as she ran into the ER that day. She said everywhere she looked, everyone was crying. Doctors, nurses, receptionists, even the EMTs standing out by the ambulance were crying. You simply wouldn't be human if you were not devastated by the struggle of this little boy, this baby.
It wasn't about the struggle Glennie faced just that day, but the one he faced his whole life. He depended on machines to help him breathe, or to breathe for him. He depended on machines to feed him and to keep his airway clear because he didn't have the strength to do it himself. He depended on me, his mom, to exercise his arms and legs every day because he couldn't even move them. He depended on doctors and nurses and even his family to save his life numerous times throughout his 20 months of life because SMA is that cruel and harsh and devastating. This is the nature of SMA, crippling and progressive and fatal and, at this point, incurable. He depended on Glenn and I to do what we thought was best for him and to make life-and-death decisions on his behalf.
There are so many horrific stories that can be told about SMA, even just the ones that Glenn and I and our family experienced firsthand. There were so many times we and our families watched Glennie suffer terribly due to Spinal Muscular Atrophy, and there are many others like him and many families like us who face these devastating circumstances and heart-wrenching decisions every day, families who face uncertainty and know the pain of a broken heart on a daily basis and can feel death at the door.
This post is long, but is only the tip of the iceberg, only a small glimpse into the life of a family who deals with Spinal Muscular Atrophy. I felt moved to write it through the pain and tears because I want others to know about SMA and that we need to do what we can to cure it.
The signature goal for the Petition to Cure SMA is 100,000, and it is currently at 57,200. We need more signatures!
