As most of you know, Cole Gabriel Newman was born on January 5, 2015 at Howard County General Hospital by emergency c-section. He was declared strong and healthy right at delivery. After the newborn evaluation Cole and I were moved to the new mother unit for some much needed rest. Everything seemed so normal…perfect… 12 hours later that changed.
At 12 hours after birth, bundled tight and sleeping in his newborn baby bucket, Cory noticed some light fluttering of Cole’s eyes. We called the nurses in and after just a few minutes were told that Cole was just “learning” his eyes and doing “new baby stuff”. This was Cole’s first seizure. A few minutes later, Cole’s eyes were fluttering again, this time we insisted on a NICU evaluation, reluctantly the nurses agreed and took Cole over to the Neonatal Intensive Care Unit (NICU) for an exam.
Within an hour Howard County Generals neonatologist came to our room and said he agreed that the fluttering was abnormal, and that indeed Cole was having seizures. To find the reason why, the doctor asked permission to do a lumbar puncture, CT scan, and draw a ton of blood cultures. As a precaution he informed us that a feeding tube had already been placed, although Cole would only be allowed to have IV fluids at that time and that Cole had already been started on broad-spectrum antibiotics since an infection was the most likely cause of his newborn seizures.
After 4 or 5 hours of waiting without our precious newborn, the neonatologist returned to our room and this time sat down. With a heavy sigh, he began to tell us that Cole has a very very rare, and very large malformation of his brain. Specifically his Right Hemisphere called Hemimegalencephaly (HME) and that Cole’s seizures had already increased in both frequency and severity. The doctor then admitted that because of the extreme rarity of the condition he was unsure of how to stop the seizures, or even what steps needed to be taken next, so he had already consulted with the Neuro specialists at Johns Hopkins Hospital. Cole was now only 18 hours old.
Completely devastated and crying, we Googled (not a smart idea)… Hemimegalencephly and found out that this condition is genetic; although, not hereditary but is a “Hemimegalencephaly is a rare dysplastic malformation of the brain resulting from overgrowth of part, or all, of a cerebral hemisphere. Clinical findings include psychomotor retardation, hemiparesis, and intractable seizures. Early control of seizures is needed to allow maximal psychomotor development”
Just 2 short days later the Johns Hopkins Neonatal Transport Team arrived at Howard County’s NICU, packed our sweet newborn up and transferred him downtown (A huge thank you to the transport team for taking amazing care of Cole).
Upon arrival at Johns Hopkins NICU, Cole was quickly placed in an isolate to minimize stimulation and started on video electroencephalogram (EEG) monitoring to record his seizure activity. We had just enough time for light kisses and a short snuggle before the monitoring started. The monitoring was supposed to last 24 hours… it lasted over 7 days, we had no idea that these were the last kisses we could give him for over a week while the doctors collected information and tried to figure out how to best control his, at this point, many many seizures.
It was during this time that we started to learn some valuable information…
1. Cole is not only having “Clinical” seizures that a person can see as they happen but that he also has “non-clinical” seizures (ALOT of them) that are happening in his brain that we can’t physically see.
2. Medications will NEVER be able to completely control Cole’s seizures and his condition will get much worse the older and more developed his brain gets.
3. Most doctors have not heard of this condition, I’m pretty sure they do the same google search I did.
4. The only hope of Cole to have any quality of life is to have an early age (3-6 months) hemispherectomy. A Hemispherectomy is a very rare surgical procedure where one cerebral hemisphere (half of the brain) is removed or disabled.
5. My “critical illness” supplemental insurance policy does NOT cover the brain as a critical or vital organ failure since it cannot be transplanted only removed.
So after 2 ½ weeks in the NICU, NG tube placement training, medication schedule reviews for Cole’s 3 seizure medications, and pre-scheduled follow-up appointments with Cole’s primary care, neurologist, neurosurgeon, physical therapist, G.I. specialist, nutritionist, occupational therapist, urologist, and home nurse…we were ready for discharge.
Late January we welcomed Cole (age 3 weeks) home and were finally able to introduce him to his two older brothers James (age 4), Luke (age 2). We began settling into life with a special needs newborn.
Now that we had Cole home it was time to put him to work! We were pre-warned that Cole would probably have to have a G-tube surgically placed since he couldn’t drink from a bottle let alone breastfeed, therefore; feedings became the first priority. We also began focusing on strengthening Cole’s left side (arm, leg) since after his hemispherectomy surgery he will need to “re-map” the function of his left side to the left side of his brain.
Right away we already knew that the one thing the delivery doctors got right is that Cole is strong! Within the first week home he learned to feed from a bottle, the second week home he pulled out his NG tube forcing us to give him his medications orally, and by the third week he was breastfeeding.
Cole was making so much progress so quickly that our family developed a false sense of security…. That security was shattered February 21st when after just 3 weeks at home, Cole’s medications stopped controlling his seizures. With VENGENCE his seizures returned increasing in frequency, severity, and duration.
We rushed Cole to the emergency room and he was admitted back to the hospital. Since he was only 6 weeks old our only option was to try more medication combinations and wait till he is at least 3 months old.
Cole is STILL admitted in the hospital (it’s been 3 weeks) and his seizures just seem to be progressing. Cory and I can only count down days till he can have his hemispherectomy surgery which will unfortunately be right after I am scheduled to return to work from maternity leave.
The doctors assure us that there is a lot of HOPE for Cole, and a real chance of having a great quality of life…. But it will be a very long road that will require a lot of patience from us and hard work from him. He’ll need at least physical therapy, occupational therapy, and speech therapy. Some of these we have started already… some will begin right after surgery but ALL are necessary.
At this point all I can say is THANK YOU everyone for all the prayers, support, and kindness, it has helped keep us strong. Cole has changed our outlook on literally everything. Cory and I have a much deeper appreciation of the smaller things in life and see now how much we took for granted. I’m positive Cole is going to teach us to be more open-minded parents, more supportive friend, and just generally better people. It may have taken us (me really) a few weeks to realize, but my family has been truly blessed to have Cole!
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