The Truth About DaneBy Julie Ufema
My son Dane has Cerebral Palsy. It’s not a bad word. No, not necessarily a good word either. Before I had Dane the most I knew about CP was that Blair’s cousin Geri had it on “The Facts of Life.” Not a lot to go on, admittedly.
At 24 weeks I started going into labor twice a day, every day around 10:00 am and 2:00 pm. I was put on strict bed rest and after being hospitalized, life-flighted and completely scared out of my wits, Dane insisted on being born 11-1/2 weeks early. There was no stopping Dane then, just as there is no stopping him now.
He was strangely perfect at over 3-1/2 lbs. and 17 inches long. His Apgar scores were an 8! (That’s equal to a silver medal at the newborn Olympics.) They called him ‘the boring baby’ in the NICU, quite a compliment with what they see on a regular basis. There was good news all around – until that day.
Receiving a DiagnosisThey HAD to do a cat scan of Dane’s brain because he was a ’29 weeker’. It’s simply mandatory. No one expected to find what they found. Dane had two types of brain damage. The first occurred before birth and the second occurred afterwards, not unusual for such a premature baby.
We learned that the scale of brain damage severity ranges from 1 to 4, 4 being the worst-case scenario. After much deliberation the general consensus was that both of Dane’s ‘gray spots’ were about a 3.
Speculation flew. Dane would never talk. He wouldn’t eat or swallow on his own. No one really committed to the mobility issue. I appreciated that the doctors didn’t claim to be God, able to predict our future. But then there were moments I wished that someone would, just so I could process the news and move on with our lives.
Finding HelpWe got help, immediately. He had an aide, teacher, occupational, physical and speech therapist come to the house weekly. I had no fear of the ‘never speaking’ issue when Dane was chatting up a storm at 10 months old. He began screaming bloody murder almost immediately. Dane’s all-time, record-breaking temper tantrum topped out at an eardrum destroying, seven-hour stretch. He had moxy. That was for sure!
Fast-forward five years and Dane is beyond a miracle. He is healthy as a horse. No glasses or hearing aids necessary. He has entered mainstream kindergarten with no educational plan for a developmental delay. Dane simply can’t walk or use his hands effectively. He can’t write, sit up unassisted or feed himself beyond finger foods. But his mind, his sense of humor, the indescribable gleam in his eye is all truly infectious.
Experimenting with TreatmentsAll that love him want him to live to the fullest so we opted to have two surgeries to help him do just that. I promised Dane that I would always be his voice when he couldn’t speak for himself. I truly believed he would want to take risks to reap the rewards. Now I find myself questioning just how far we should go.
The first surgery was a complete success. He had a spinal dorsal rhizotomy. I describe it as an incredibly sophisticated game of ‘Operation’ where they open your spine and test the nerves for over or under stimulation. If acting abnormally, the nerves get cut. After a tough recovery, Dane responded extremely well to this surgery.
Dane then underwent an Intrathecal Baclofen Treatment. The surgeon inserted a hockey puck-sized pump in Dane’s belly, hooked up to a tube that wraps around his side and then feeds into his spine. The oral muscle relaxers he once took that unnecessarily affected his brain could now be sent directly to the parts of his body that needed them most and at a much higher dosage. The benefits were immediately noticeable.
Dane could isolate his pointer finger as opposed to ‘raking’ his food with many fingers. He properly held a crayon instead of fisting. He could reach above and behind his head. His speech seemed to improve. His arms and hands comfortably laid at rest when not in use. Small things that most people would never notice, never go unnoticed around here.
Questioning Our DecisionsBUT, the incision wouldn’t heal. It burst open three weeks after the first surgery in the car on the way home from vacation. A one in a million side effect and there it was, right in front of my eyes.
At the hospital they laid Dane out, gave him a local, proceeded to clean out the original incision and then stitched him back up, all the time hoping that that would be the last of it. I held my screaming baby boy’s hands and promised him that this would be the end of it. This was as bad as it would get. I didn’t know that I was wrong. I clearly didn’t know that I was right but I was desperate to make him feel better.
Two weeks later we found ourselves back in the hospital with another burst incision. Again, they cleaned him up, and without stitches, sent us home for a few days. Four days later, the bubble had grown back again. This time I heard the word I had been dreading, ‘surgery’.
Soon we will go in, for what I hope is the last time on this issue. The doctor wants to try and save the pump – cut away the stretched skin and re-close. My motherly instincts tell me to scream, “Just take it out! For the love of all things good and holy, just take it out!”
But what would I say if I was Dane? I would want every chance possible. We can try again when Dane is bigger and stronger but that will require another surgery. I’ve never waited for anything in my life and the kindred spirit I’ve found in my beautiful, willful, stubborn son stares straight into my eyes and trusts his momma to do what’s right.
Life, for me, was always about being right, but after meeting my children I learned that life is really about doing what’s right. With this next step I just hope we all do right by Dane.