Laura and I have been together since 2001 and always dreamed of building a family together. We had a big, old fashioned (non-legal) wedding in 2005 and about 2 years later, Laura started trying to get pregnant. We were extremely blessed and, despite having had her pelvis crushed by a truck in a motorcycle accident 11 years earlier, Laura got pregnant on the first try. Our son Simon was born on April 9, 2008 in a relatively quick and beautiful home birth.
Laura took some time off from her job as a school social worker to be with him at home and I returned to my job in public health after 7 weeks. We adjusted to our new lives with our new baby and happily carried on until August 1st.
Friday, August 1, 2008 started out like any other day. By that evening, however, our 4 month- old son Simon was in a bed in the ICU at Children’s Hospital Oakland and by the next morning was on life support, fighting for his life.
Friday afternoon Laura brought Simon to have lunch with me at work. While they were there, we both noticed that he was breathing quickly. On their way home Laura and her father (who was visiting) heard a wheeze. Within 20 minutes we were at his pediatrician’s office for a quick assessment. She observed him for 60 seconds and immediately sent us to the local ER with a possible diagnosis of pneumonia. Many test and a few hours later, he was diagnosed with acute congestive heart failure and transported to the Children’s Hospital Oakland emergency room via ambulance.
We spent a very long and scary night with Simon being monitored closely in the ICU. By 5 am the next morning, every breath Simon took was a full body effort, his shoulders coming almost all the way up to his ears and his belly sucking in so hard you could see all his ribs. Soon Dr. Sharon Williams, the attending on call that night, came in to talk to us. She was very kind but got right to the point. If we didn’t intubate within the next 15 minutes, his heart might give out.
Laura and I agreed to the procedure, handed Simon off and stumbled past the equipment tray and the assembled team, practically falling into the hallway, stricken with grief. The clerk on duty gently led us to the conference room nearby after finding us huddled on the floor in the hallway, hysterically crying. We spent the next few hours in that tiny room, crying, talking, calling our close friends and family and waiting for someone to tell us that he was stable on a ventilator.
A few hours later, we met Simon’s cardiologist, Dr. Howard Rosenfeld. (We later nicknamed him "Dr. Hunkypants).
Cardiomyopathy, with incredible clarity and answered all our questions patiently and in simple language. He warned us that the vast majority of the time, they never find a cause for Cardiomyopathy and that about one-third of children recover completely, one-third stabilize but require medication and treatment for the rest of their lives and about one-third become so ill that they require a heart transplant and/or die.
Unfortunately, they had no way to predict which group Simon would fall into. They had him on a number of medications and we would just have to wait and see. He let us know that we could expect at least three weeks in the hospital. My jaw dropped when I heard how long we would be in this hell. Little did I know that Simon would stay in the ICU for just shy of four months.
In that first week, Simon had 13 lines, machines and tubes connected to him. You could barely see him through all the equipment.
When the three-week mark came and went, we realized that Simon was not one of those kids who was just going to bounce back. I (Jaime) had to go back to work full time since I had limited Family Leave left. For almost four months my daily schedule looked like: wake up, go to the hospital, go to work, go straight to the hospital, go home and go to bed. Wake up the next day and start all over again.
Laura’s days looked a lot like mine but her work was helping Simon have the most normal experience possible in the midst of our own and other people’s pain and suffering. She held him all day long once he was free of the ventilator and eventually got to take him for walks around the hospital. Laura had planned to return to work in November, but as time went on it was clear that when and if Simon ever got out of the hospital, he was going to need full time care.
Throughout the next few months, Simon had the many, many ups and downs the doctors and nurses warned us about. He got two severe infections that almost cost him his life each time. He learned to turn pages in a book. He had a surgery to implant a Broviac line after his PICC line kept failing. He learned to roll over. He stopped eating by mouth and was fed only by a Nasogastric tube. He witnessed his mothers get legally married out in the courtyard. He had a spinal tap. Those months were such a bizarre mix of normal baby milestones and terror, incredibly bright moments and tragedy. I still say, “there’s nothing better than a good day in the ICU and nothing worse than a bad one.”
That Monday morning, we met with our medical team and cried with relief when our cardiologist said he still had plenty of tricks up his sleeve and that our new goal was to try to manage his disease with aggressive medical, not surgical treatment. Our medical team never gave up hope for Simon and that kept us going. We all knew the statistics but what they kept us focused on were the kids that made it. No one ever threw in the towel and for that I am eternally grateful. I now know a lot of other parents with children who were less sick than Simon who were written off by their doctors. We have been so blessed by the power of positive thinking…
After about 6 weeks in the hospital, he got so sick that we had an emergency visit with a transplant surgeon at Lucille Packard Children's Hospital. After agonizing deliberation, we decided not to list Simon for a heart transplant. Our friends were with Simon in the hospital when we returned from Stanford and held us while we wept and talked about what our decision might mean for him and for our family and community. At that point, he was so ill we began to talk to our doctors about palliative care and started to think about having to say goodbye. I cannot begin to convey how horrible that weekend was, and yet the love and gentleness we received from our friends, family and medical staff, regardless of their personal opinions about transplants, kept us going and really, kept Simon going.
Monday morning, after a devastating weekend spent beginning to say goodbye to our sweet baby, we met with his Cardiologist, Dr. Rosenfeld. He made it very clear that he still had tricks up this sleeves and was not giving up on him. And he and all the medical staff were clear that no matter what their personal feelings about transplant, they 100% supported the decisions we were making for our son. The unwavering support, incredible medical care and undying optimism of our medical team and other staff at CHO kept us together and able to be present and loving for Simon.
Dr. Rosenfeld soon started him on a new drug, Carvedilol, and it looked like Simon was slowly, slowly beginning to improve. The rollercoaster ride continued, however and he managed to get septic the week we thought we were going home. It was one of our darkest hours. Things had been spiraling downwards at work and I had a job interview the day Simon started to look very ill again. I made the impossible decision to leave the hospital that morning and go to my the interview (and eventually got the job) but that night due to a drug interaction with the antibiotics Simon was taking for his sepsis, he started bleeding internally. When he began vomiting and crapping blood that night, they moved him out of the step-down unit and back into the ICU. To get so close to going home, only to have him look like death warmed over again was beyond terrible.
He slowly continued to stabilize and every week we thought that maybe, JUST maybe we would go home. Finally, on November 20, 2008, Simon was released from the hospital.
He’s only been readmitted a few times, and none have been heart related! He’s one of those miracle babies that has beaten the odds so far. Now that Simon is stable and home, they can tell us that they weren’t sure he would ever make it at all let alone doing as well as he is. Every time we see a doctor or nurse from the hospital when we’re out walking around in our neighborhood, their jaws drop in awe because of how well he looks. Almost 2 years later, those same staff members come outside to see Simon when we swing by to pick up medicine. We like to think it is not just due to the baked goods we plied everyone with during those months in the ICU.
Sure, Simon is globally delayed, meaning he is months behind in things like speech, problem solving, fine and gross motor skills and still does not eat by mouth. But man, does this kid know how to live! He greets new people with a beaming smile and a “Hi!”. He explores his world and gives hugs and kisses and bounces back in seconds after barfing his little guts out (which he does multiple times a day). People can’t tell that he’s sick so we have perfected our Cardiomyopathy “elevator speech”.
“This is Simon. He has a severe heart condition called Cardiomyopathy. We have to be really careful about germs because he can get really sick really easily, so that why we: have to go/keep our kid away from yours/wipe down the swings. He doesn’t eat by mouth because he was really sick when he was little and didn’t learn how to eat so that’s why he: won’t eat the treat you’re so generously offering/has that funny thing sticking out of his belly/is attached to tubing which is attached to a backpack that I’m wearing/ puked all over the place.”
We follow it with a big smile. Seems to work so far.
We hope that you follow us along on our adventures...