Christopher Jacob Dodd

March 19, 2010

My name is Sarah Dodd and my little one Christopher Jacob "CJ" just got diagnosed with Distal Trisomy 10q at 24.1 with no missing genes. He was born on time and weighed 5 lbs 4 ozs and was 19in. He was in the NICU for 8 days due to his rapid breathing and later due to his low platelets and high bilirubin. After birth I noticed that CJ's right eye stayed closed....I was told that "it's just swollen." Well after 3 weeks I knew the "swelling" should have gone down My pediatrician referred us to eye doctor and had us get blood drawn. The eye doctor dx'd us with ptosis(which I now know is a distal trisomy trademark) and has now referred us to an eye surgeon. Just yesterday I was informed of his specific genetic abnormality and now we are on to schedule OT/PT, 2D echo and Renal and head ultrasounds......my world has drastically changed in 24 hrs! So far the most noticeable difference is his muscle strength....still having trouble stabilizing his head and his right arm is weaker than his left....I had thought it was due to his hate of tummy time and my not making him do it often enough...... probably due to his syndrome and me combined! Any support or word of encouragement would be greatly appreciated/needed :) It's going to be a challenge but my 1 in 6 million son is TOTALLY worth it!!!!!

--- Sarah Dodd

Update - May 2010

This past month has definately been a whirlwind but so far really great news.....CJ's ultrasound of his brain came back great, his kidneys came back enlarged but no malformations or reflux(his urologist thinks that there might be a kink in the ureteters that will un-kink as he grows...recheck in June) and his 2-d echo showed a small hole between the atriums that his cardiologist isn't really concerned with("lots of kids still have small holes at 5 mos, we'll recheck at age 2). We've started OT twice a week and are on the list for PT, his neck is getting stronger by the day!!! He rolled over all by himself the the 14th!!! And he cut his first 2 bottom teeth this month...a week apart. So overall it's been a very busy but rewarding month and a half since diagnosis.

Update - January 2012

SO much to update you on.....CJ was doing very well as of late, starting to properly crawl, standing, pulling to stand, side stepping, started clapping independently, giggling ALL the time. He was such a joy!!!! On Tuesday tho things took a turn......CJ hadn't been feeling great most of the day, he'd thrown up a couple of times and was running a low-grade fever. I went to work at 6:30pm and left him with his nanny(CJ's dad and I have now divorced). At 7:15pm she called me and said that 9-1-1 was on their way and that CJ wouldn't wake up. They said he was lethargic and his pulse was low(60s). They rushed him to a pediatric ER and I met them there shortly after arrival. We got a CT of his brain and that showed a large head bleed. We transferred him to another hospital capable of doing pediatric brain surgery(happens to be the hospital I work at) and he was in OR by 11:30pm. The surgeon had told me the surgery would take about an hour, so three hours later I knew that things were not going as planned. The surgeon came out 3.5 hours later and said that this was "not survivable" We had him for another 24 hours but we lost him at 2:50am Thursday Jan 19th. I spoke to the neurosurgeon later and he said that when he was operating he found 2 small "tangles" of vessels and one looked like it had spontaneously ruptured. I asked if they should have been able to see it on the ultrasound that we did when CJ was 5 mos old, he said that they were VERY small and only a MRI or angiogram would've shown them and that they usually only perform those tests AFTER a bleed has occured. I'm not sure if these "tangles" are Distal Trisomy 10q related but I thought I should give the group a heads up of a possible threat. Thank you for all your support and knowledge of the wonderfully special little guys. I will always have a special place in my heart for the DT10qs. I will check on the website often!

God bless!!!

Sarah Dodd

Name Christopher Jacob Dodd
Date of Birth Nov 2009
Date of Passing Jan 2012
Gender Male
Diagnosis Distal Trisomy 10q (Addition 24.1-qter)
Parents Chris and Sarah Dodd
City Las Vegas, NV, USA
e-mail smdrn[at]yahoo[dot]com (change [at] to "@")

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