We are raising money for Gage to have his Selective Dorsal Rhizotomy (SDR) surgery at St. Louis Children's hospital. The money will be used towards medical expenses, travel and lodging expenses for multiple trips to St. Louis, and missed work for us to be with Gage through this process and through his extensive physical therapy after surgery.

Here is his story....

Gage Michael O’Reilley was welcomed in to the world 12 weeks early on March 26, 2014. They had hooked me up for my daily monitoring of Gage’s heart rate. He was having a few decelerations of his heart rate right away when we started. He was dropping down to about 110 bpm. So the nurses had me switch positions and see if that helped. As the night progressed he was decelerating on a regular basis; to the point where he was decelerating to 100 bpm every 4 minutes. The doctor came in and started me on fluids and said we will give him 30 minutes to even out or we are going to deliver. Well an hour went by and all of a sudden there are 4 nurses in my room trying to find baby's heart rate.

Gage’s heart rate had dropped down to 90 bpm, it was not coming back up with re-positioning. So they whisked me to the OR to deliver. I barely had time to process what was going on. Next thing I knew I was hearing a faint  little cry and  he was whisked away to be assessed by the NICU. The doctor informed me that not only was the placenta not functioning well baby's umbilical cord was shorter than normal and it was wrapped around his neck! So we would have started having problems with his heart rate as I got bigger and since Gage was head down already. Gage was breathing on his own in the NICU with the help of a cpap machine. Things were going great for about 2 weeks when they did a routine ultrasound of his brain when they found a bleed in his brain and “fluid on his brain.” This is also known as hydrocephalus and we were going to monitor in hopes that Gage could process the extra fluid on his own. Gage ended up not begin able to decrease the fluid in his brain on his own and was scheduled for surgery. They ended up placing a reservoir under the skin with a catheter that they can drain the fluid from daily. They would take extra fluid out daily for about a month when Gage started getting rid of fluid own his own. They never really addressed the bleed on his brain after that. Gage was in NICU for 71 days before he was able to come home.

Gage was sent home from Children’s June 5, 2014. He was sent home on caffeine (his little body needed the extra jolt to get through the day) and a monitor the watched for him to stop breathing. We were able to stop the caffeine a few weeks later and then the monitor in the beginning of July. Gage was sent home with orders to follow up with his pediatrician, eye specialist and neurosurgeon.

We continued his follow up with his neurosurgeon to monitor the hydrocephalus and the need for a shunt placement. We started seeing them as monthly bases and then it got changed to every three months and then was 6 months, than once a year and now we don’t go back till February 2018. His MRI’s have been showing that his body has been able to get rid of the fluid the way it should and so far a shunt is not necessary! YAY!!!.

We have been told by his neurosurgeon since being sent home from the hospital that due to his brain surgery he had in April 2014 that he will have left sided weakness until his body caught up. Gage has had a program called Help Me Grow come to our house once a month through the school to monitor his progress. While they were out in February they brought up the word Cerebral Palsy. Both Dan and I looked like a deer in headlights and you could tell the gals were concerned by our reactions and started back peddling. They recommended we call his pediatrician for braces/AFO’s for his feet to help move things along. We called his pediatrician for the orders for AFO’s (Ankle Foot orthotics) and after some time it was determined that we needed to see a neurologist to get the orders.

So we made an appointment with a pediatric neurologist. On February 17, 2016 Gage was officially given the diagnoses of Cerebral Palsy.

Let’s let that sink in for a bit………………………

Cerebral Palsy describes a problem with movement and posture that makes certain activities difficult. It is caused by abnormal brain development or damage to the brain that occurs before birth or early in life. Cerebral Palsy causes problems with muscle tone, movement, balance and/or coordination. The brain damage that causes cerebral palsy is permanent and non progressive. It cannot be repaired and does not get worse. There are multiple causes for cerebral Palsy some being: bleeding in the brain before, during or after birth, lack of oxygen before, during or after birth and prematurity. Which we know Gage had suffered from all of those.
We were informed that Gage had quadriplegia Cerebral palsy(CP). Quadriplegia Cerebral palsy affects the entire body- the legs and the arms. This type of cerebral palsy is most common in babies who experience a lack of oxygen. We were recommended to a CP specialist at Gillette Children’s. We were able to start physical therapy there as well. Gage has been a little hesitant with therapy but is slowly getting there. Therapy has also recommended Gage get a walker to help improve his mobility.

We saw Dr Taniguchi today who specializes in CP. The Dr stated that on the CP spectrum of 1 to 5 with 5 being the worse that Gage is a 1. The Dr believes that Gage will walk with a little help of a walker and AFO’s (Ankle foot orthotics). The Dr does not believe that we need to start Gage on medications at this time but doesn’t mean it won’t be necessary in the future. Gage would likely need to have Botox injections to help with his problem areas. The specialist also stated that if we see Gage still having issues with left side arm weakness after he has learned to walk that we could try putting his right arm in a cast to make him have to start using the left arm more. We were able to get Gage molded for his AFO’s today before we left and should be getting them in about two weeks. So here’s to hoping we can get this little monster moving on his own so he can have some independence.

Dr Taniguchi did say that Gage might be a good candidate for Selective Dorsal Rhizotomy (SDR) surgery. SDR involves sectioning (cutting) of some of the sensory nerve fibers that come from the muscles and enter the spinal cord.  Two groups of nerve roots leave the spinal cord and lie in the spinal canal. The ventral spinal roots send information to the muscle; the dorsal spinal roots transmit sensation from the muscle to the spinal cord. At the time of the operation, the neurosurgeon divides each of the dorsal roots into 3-5 rootlets and stimulates each rootlet electrically. By examining electromyographic (EMG) responses from muscles in the lower extremities, the surgical team identifies the rootlets that cause spasticity. The abnormal rootlets are selectively cut, leaving the normal rootlets intact. This reduces messages from the muscle, resulting in a better balance of activities of nerve cells in the spinal cord, and thus reduces spasticity.

After some research and wonderful advice from a close friend we were directed to St. Louis Children’s Hospital to see Dr TS Park. This is the number 1 hospital in the world for this surgery! Dr Park has performed over 3500 SDR surgeries. We have just mailed off all the paperwork and x-rays they requested on Monday and we are hoping soon that we will be able to get the appointment to get Gage evaluated for SDR candidacy.

We will keep everyone posted as we learn new information regarding surgery and what’s to come.