My son Max was born on February 25, 2001. I was fortunate to have an uneventful pregnancy and he was a healthy 7 pounds, 10 ounces. It was love at first sight with him. Although he was my second child, there was just something about him that I recognized the minute the nurse put him in my arms. I remember getting yelled at during my stay in the hospital because I kept him in my bed with me and didn't let them take him to the nursery.
Max was a smiley, happy, goofy baby and child. As he got older he rolled his eyes like me, and had a similar sense of humor and the occasional bout of moodiness. He made me laugh every day. My favorite thing about Max was that he liked to be held even at four years old, and he was very affectionate - always telling me, "I love you mama."
He had big brown eyes and the longest lashes on a boy that I have ever seen. People would stop us ALL THE TIME and comment on them. And Max knew how to work it and flutter them at people to get his way. He was hilarious.
The best thing, though, was Max cared about other people very much. If he'd get a new toy, he would play with it for a while, then when it was time to gather old toys and clothes for Goodwill, he would always try to give things away that I knew he still wanted to play with. I volunteered at an animal shelter and he would sit on my lap and look at the dog's photos online and tell me how he wished each one would get a good, loving home soon.
His dad traveled for a living and Max's older brother was at school, so it was just me and Max every day, all day. I love and miss him so much.
Max began throwing up and complaining of headaches in late 2005. His pediatrician completely blew us off and said it was probably just lactose intolerance. On December 13 I demanded a CT scan and a large tumor was found attached to his brain stem. I was told to drive him to the Children's Hospital that was 2 hours away. I threw things in a bag, grabbed him, dropped the dogs off at daycare and drove there in a complete panic. I remember staring at him in the rearview mirror all the way down. He looked happy and obviously did not know what was happening.
The tumor was confirmed the next day by a neurosurgeon and steroids were given to shrink it before surgery scheduled on Monday December 19, 2005.
That morning Max was uncomfortable and crabby. He clung to his dad and did not want to come to me. We brought him to the hospital and the nurses came to get him for surgery. He gave his dad and hug and kiss but barely said goodbye to me. That memory haunts me to this day. That the last moment I had with my perfect little guy while he was alive, was not a good one.
Max's surgery took all day and when it was over, the neurosurgeon said it went well, they got most of the tumor out. The next few days of recovery were "crucial" and he" needed to be monitored very carefully." During the first hour, we were delighted as Max was visibly trying to open his eyes. When the nurse said "squeeze your mom's hand," he could. He also could push his foot against a nurse's hand.
Unfortunately the surgeon did not come to check on him before leaving for the day, like he said he would. When Max began to have seizures early the next morning and the nurse's pleas for the on call surgeon to come to the hospital went ignored, my son had to be placed on life support. Max's surgeon did not follow protocol during surgery and did not put in a shunt to drain fluid from his brain. His brain swelled over night.
We left him on life support for days. My husband and I never left his room - one of us was always there. I slept on the floor and refused to go to the Ronald McDonald house across the street.
On December 21st, I climbed in his hospital bed and put on his favorite cd because a nurse told me music helps people recovering from brain surgery. Obviously she was just saying that - there was very little activity on the scans - he was already gone but I still was hoping for a miracle. When everyone left I whispered in his ear that if he wasn't strong enough to wake up, he could give up. I have no idea why I said that to him to this day because I surely did not mean it - I wanted him to wake up! I wanted him to be okay and come home. As the words left my mouth, the machines keeping him alive started beeping loudly and I was quickly escorted out of Max's room. He had gone into cardiac arrest. I watched a large doctor basically straddle my teeny son with the paddles in an attempt to bring him back.
We met with the chief of the hospital over the next few days and filed an official complaint against the neurosurgeons involved in his surgery and after care. I was furious for many obvious reasons, but mostly because I wanted all my thoughts and attention on my son.
Max had more scans on Christmas Eve morning and at this time he was deemed completely brain dead. At 3:30 pm, my son was removed from life support and placed in my arms in the rocking chair I was sitting in. I felt his heart beating for maybe 5 seconds, and then nothing. His lips turned blueish fairly soon after. I do not remember if my husband held him. My parents were there and escorted me out. I was in a blur. I regret that I did not take more time with him. Everyone was rushing us out it seemed. I remember holding on to my dad and walking backwards to the elevators so I could keep my eyes on Max for as long as possible.
I met with various lawyers weeks and months later. Even though in private meetings the hospital representatives admitted wrong-doing and miscommunication throughout, the torte reform laws in that particular state prevented us from being able to bring litigation against the hospital or doctors involved. When I filed a complaint with the state licensing board, the two neurosurgeons were found to have been "negligent and used poor judgement," however; "they provided the
minimum required care" for my son and so no further action would be taken against their licenses.
I can't really describe how it feels to know that a person can willingly place a cup of scalding coffee between his or her legs and successfully sue the fast food chain providing the coffee, but neurosurgeons who are being entrusted with a child's LIFE, can completely botch a procedure and then alter medical records, and have absolutely no consequences for their actions. It is a sad day when "minimal care" is all a child is required to receive in the eyes of the law.
I have many regrets which include taking him to a different pediatrician, scheduling surgery for a different day, or using a different hospital. But as I mentioned before, my biggest two regrets are not being able to hug and kiss him goodbye before surgery and whispering to him that he could let go if he wanted to.
Max died on Christmas Eve in 2005. I abhor this holiday, but smile through it for everyone else, especially Max's older brother.
I couldn't figure out how to post a photo of Max in this thread, so here is a link to a photo on flickr. I hope it works.
www.flickr.com/photos/81416731@N08/7453800382/I love and miss you Max.
2/25/01 ~ 12/24/05