Cameron's Story/My Story

Cameron, now 7 years old, was born 32 weeks premature. Prior to his birth we learned of 3 conditions:
Hydrocephalus (water on the brain) this would require a brain surgery within days or weeks of birth.
Single Kidney - the strangest thing about this diagnosis is they told us at the 20 week ultrasound he had two kidneys. I'll never understand how one just disappeared? Many people live with just one kidney, we just had to be certain his one kidney would not reflux and continue to grow. It has proven to be a strong kidney, capable of doing the job of two thus far.
Dandy Walker Variant - at the time of diagnosis this one troubled me the most, but as time as gone by it's turned out to be the least of our issues.

And so Cameron entered the world on a beautiful spring day in 2006, his delivery room was filled with 15+ people, several doctors and neonatologists, far from what I suspect the typical birth looks like. He came out crying, he was breathing and as a result I was able to take a deep breath. There was no holding of our new baby, a quick photo and they whisked him off to the NICU. We spent the next 4 days at Prentice in the Special Care Nursery. Upon further discovery it was learned we were dealing with some more problems and he was transported via ambulance on day 4 to Children's Memorial Hospital.

Children's would become a permanent part of our lives. Now included in Cameron's diagnosis are the following conditions:
Spina Bifida Occulta (hidden spina bifida)
Tethered Cord Syndrome (surgically repaired)
Diaphragmatic Eventration (potentially will require surgery, initially told by year one, we are year 5 and there is no problems)
Single Kidney
Hydrocephalus
Mild Cerebral Palsy
Dandy Walker Variant

He's logged countless hours of therapy, 4 brain surgeries, 1 spinal surgery, and close to 50 other procedures/testing. MRIs, Xrays, Ultrasounds and the like will be a part of his life indefinitely.

Most important, none of this defines who Cameron is. Cameron is a joyful boy, who loves life, laughing and teaches us to appreciate every moment.



Mom's Story * These notes were written before Cameron was born, I found them and thought editing them today, now 4 years later, would not be right.

The dates that led up to May 22nd are etched in my memory as if they just happened.

May 3rd (week 29): A routine check up shows I am 3cm dialated and contracting. So within 10 minutes I’m in the labor and delivery room getting hooked up to monitors and poked with needles.
Dr Levin is on call and I can see in her face that this is a serious situation. She sits down on my bed introduces the nurse to me and says she’s one of the best. I immediately like this nurse, she has such a calming quality to her I want her to stay with me all night, but she’s off in an hour. They explain the plan of action – stop the contractions with magnesium, a round of steroid shots over 48 hours to strengthen the baby’s lungs and bed rest. Dr. Levin tries to make me feel better saying once we get the contractions to stop I’ll go upstairs and read trashy magazines for a few weeks – for a minute there it almost sounds appealing. But I am quickly reminded of the gravity of this situation when they start hooking up the fetal monitors and the magnesium starts kicking in – I am getting hot and nauseated. This goes on for 24 hours, it is 24 hours of pure hell. In and out of my haze I am sending emails on my blackberry trying to get work under control, I am even talking to people on the phone all work related matters. I can’t bear to talk to anyone about what’s really going on here. At some point in the evening two dr’s from the special care nursery arrive to explain the potential complications we need to prepare for should the baby come soon. There is talk of cerebral palsy, breathing difficulities and such.
They ask if we have any questions and I am numb with shock and at the same time miserable from the mag. The male Dr asks if I understand what he’s saying, given the mag and all – and I do, I understand it all. What I don’t understand is why this is happening.

The next afternoon they send me up to the 10th floor, I am no longer contracting, the magnesium worked. I’m glad it did the job, but I don’t ever want to go through that again.

May 5th: Brook my very sweet nurse squealed “it’s time to go to ultrasound” and wheeled in the wheelchair for me. My mom and I headed down there and I’ll admit I was looking forward to the ultrasound, another sneak peek at our baby. There we sat, my mother and I, as the technician rolled the machine all over my belly, all seemed ok. Then they brought in another woman and I really didn’t think much of it – she introduced herself – Dr Julien. And it was Dr Julien who delivered some of the worst news in my life. Our baby had fluid on the brain known as Hydrocephalus and Dandy Walker Syndrome, and only one kidney. I started sobbing uncontrollably and my mother clutched me in her arms. She said “We can do this” at that moment I wasn’t sure that we could.

May 10th: We had to go back down to the 3rd floor for the Amniocentis, I was wheeled down to the exact same spot where I waited for the first ultrasound. Matt was with me this time and I hated every minute of sitting in that hallway in the wheelchair, just as I had sat there one week before when everything was ok for the most part, before I received the news that would change our lives forever. I told Matt I have to get out of this hallway now, they need to put me in a room I just couldn’t stand the thought of sitting there one more minute and reliving it over and over again in my head.

May 12th: I am in labor again, round two of magnesium is started and later stopped when my water breaks. The lights are so bright, I feel as those I am looking into a semi-truck head on, it's 1:30am in the morning, and I just want this all to stop. (We later learn after Cameron's birth there was an extra lobe to the placenta that could have caused catastrophic results when my water broke.)

The days between May 10th and May 22nd become a blur of tears and lack of sleep, with each new face that enters the door I am forced to feel the pain all over again.

My first weekend in the hospital and the families gather together, each time a new face enters room 1086 I look to my right and burst into tears, why am I here, why is this happening. Everyone has different reactions. Some of which are comforting, others are at times not so much.

My father and stepmother arrive Saturday morning, it’s only been a few years now that my now divorced parents will actually speak to one another and in times of crisis like this it is comforting to know they can sit in the same room and be civil. So there we all are, me, my mom, my dad, Ellen my stepmother and Matt. There’s a lot of silence and some occasional words spoken, I am staring into space only half listening to what everyone is saying. There is a knock on the door, in walks an older woman who says she is from Holy Name Cathedral and would we like communion, I immediately say yes. And so we all hold out our hands and she begins to say a prayer and I burst into tears, this is not happening to me, I am not lying in a hospital bed unshowered for days and taking communion in hopes that God will save my baby. I am a complete wreck.

Now 4 years later, reading through this all again, you want to tell that girl who was a wreck that it's going to be ok. This was only the beginning of a very long road, that will take twists and turns you'd never expected. Some of them will be amazing and some trips will be places you'd never like to visit again. But on this road you will learn some of the most valuable lessons in life and you will be a better person for having taken this road.