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Christian's Story
"You know, I have tried to not tell Christian's life story because I did not want people to feel sorry for me or him..."
Christian was born with congenital CMV, contracted late in my pregnancy. His twin, Chaz, luckily did not contract the virus (which is a miracle in it's own because generally with twins, one is symptomatic and the other asymptomatic). At birth. Christian weighed 3 lbs 1 oz and had a very low platelet count due to the vessels in his cord being crushed. In the first few days, he had 2 transfusions that jump started his platelet production. At this time we were unaware of the challenges he would face the rest of his life.
He and his brother spent 25 days in NICU and that last day Christian failed the hearing test administered to all newborns before they leave the hospital. After several ABR screenings, it was confirmed severe to profound deaf. Not even home for a month, his left arm went completely limp and we spent 10 days at the hospital and found out he had a pinched nerve. It wasn't until he did not start holding his head and progressing like his brother did the notion of developmentally delayed get thrown on the table. After neurologist and nerve conduction and muscle stimulation testing, we learned Christian has quad spastic cerebral palsy.
Through the first few years he had a physical therapist, occupational therapist, and feeding therapist come twice a week and little to no progression was made, or so I thought. He could (and still can) roll around, hold a cup, and play with toys but noticing the little things was so hard because the bigger picture overwhelmed me.
At 3, Christian was introduced to the school system and the amount of therapy he was receiving decreased tremendously (not happy about that at all). In October 2006, Christian received a cochlear implant and responded very well with facial expressions. It was quiet for the most part. The following years, we battled platelet issues and minor things such as gaining weight.
Recently he started vomiting blood (a lot of blood) and after a trip to ER and being admitted, receiving 2 bags of blood and scaring the crap out of our family (I try to joke but it's serious), the GI doctor does a scope and discovers he has esophageal varices (basically hemorrhoids in his esophagus) that ruptured. The varices were a result of the vessel flowing through the liver not having enough flow to keep from building pressure and it's because he has cirrhosis of the liver. Banding was done on three extreme lower varices and we will have more banded in a couple of weeks. Then surgery in Birmingham will be scheduled and the transplant team at UAB will perform a procedure to place a distal splenorenal shunt to relieve the pressure permanently (we pray permanently) after much research studies show that even if shunt is placed, that over time a liver transplant may be necessary.
If you have any further questions, please feel free to ask and as Christian's story progresses, I will be sure to keep everyone updated. Thanks for reading and I hope those of you who don't know Christian at least have a better idea of what he and our family have faced and will face in the future.
- Shared by his mother, Tina