- K
- D
I would like to start off by saying how greatful we are to have so many loving and caring people in our lives. Vincent's story is one I never thought I would be telling, We all hope and pray that when our little babies enter the world they would be perfect and healthy. It doesn't always turn out that way. It all started when I was pregnant with Vincent he had a two vessal cord (Single Umbilical Artery)meaning he had one vein and one artery to carry blood, oxygen and nuitrients from me to him. A normal pregnancy has 3 vessals meaning the umbilical cord has two arteries and one vein. This occurs in 1% of Singleton births and about 5% of multiple births. Having a two vessal cord can cause some abnormalities/birth defects, so while being about 17 weeks pregnant and finding all this out at our anatomy scan, we were only half way there. Dominick and I were so scared, a million things ran through our heads. This meant more ultrasounds to monitor our sweet little boys growth and to make sure his kidneys and his heart were developing the way that they should and also having fetal echocardiograms to take closer looks at the 4 chambers of Vincent's heart. On May 16, 2011 at 9:58pm after 14 hours of labor, Vincent was brought into the world via cesarean. At birth Vincent seemed like a healthy strong little boy. At his 2 month old check up, we had mentioned to his pediatrician that he kept tilting his head and also noticed some flat areas on his head. Vincent was then diagnosed with Torticollis (neck tilt) which had shifted his jaw line and Plagiocephaly (Flat head syndrome). After months of physical therapy, occupational therapy and trips to the cranial techs in Charlotte to be fitted for a DOC Band (helmet), we still had a long road ahead of us. All the therapy and DOC Band had helped fix the torticollis and Plagiocephaly, but we were told when he is not feeling well he may tend to tilt his head for comfort. When Vincent was 2 years old we were told by his physical therapist that he had a developmental delay. We had him evaluated and were told he was 9 months behind where he should be. Vincent's jaw shift then affected his speech and then started speech therapy, that he still is in today. When Vincent started complaining of back pain and leg pain at the age of two, we were concerned as any parent would be. We took him to his pediatrician and were told it was growing pains and he would grow out of it. A few months to a year had past and the doctor kept telling us it was the growing pains. We thought it was a little strange that a two year old would have growing pains and also for a year. The pain was getting bad that it would wake him up at night and he could not stay in a car seat for long period of time and want to be carried. We decided to take Vincent to a pediatric orthopedic doctor, she did X-Rays and that didn't show anything, she then suggested more therapy for a month. After no change, we decided to go ahead with a MRI. Vincent had his first MRI September 2014. The MRI showed that Vincent had a TSC (Tethered Spinal Cord) Tethered spinal cord syndrome is a neurological disorder caused by tissue attachments that limit the movement of the spinal cord within the spinal column. These attachments cause an abnormal stretching of the spinal cord. Some primary causes are Lipoma (a benign, fatty growth) and Thickened/tight filum terminale (a delicate filament near the tailbone. AANC.org Vincent had both of these.
We have never heard of this before, it was new to us and we also learned that he was born with this. Some affects from TSC if untreated are loss of bowel and bladder functions and could eventually not be able to walk. Vincent had his first cord de tethering surgery November 2014, it broke our hearts to see our sweet little boy go through that. After surgery he had to lay flat for 24 hrs to decrease the chance of spinal fluid forming under the skin. It was a struggle but he was a strong boy. After coming home we had to re potty train him, we were told this could happen, some kids regress. He recovered well and was able to be a normal kid for about a year. About 3 months ago he started telling us his legs hurt and he wanted to be carried everywhere. We knew what could be happening so called his neurosurgeon and he sent us for an MRI October 2015, the neurosurgeon said that his cord had re tethered and he would need another surgery. We were told after the first surgery that there was a 1% chance of re tethering. It hasn't been easy for us, just to think of him going through this once again now at 4 years old. We are scheduled for a second opinion at UNC Chapel Hill on December 3rd, but we know with the symptoms Vincent has that this is really going to happen again.
On a side note in the mist of all that was going on, we took Vincent to a pediatric urologist to check if any of this was affecting his blatter control and were told he has a inguinal hernia. We had let it go because we couldn't put him through two surgeries at 3 yrs old, we have noticed it has gotten a lot bigger and scheduled an appointment with the urologist and Vincent is scheduled for November 18th for hernia surgery. His spinal cord surgery will more than likely be in January.
We are not the type of people to ask for help, but this took a lot of thinking about and with the never ending medical bills coming in, we are in need of help. All of the money raised will go toward doctors visits and hospital bills. We appreciate all your help and love you all. Please keep praying for our little boy.
We have never heard of this before, it was new to us and we also learned that he was born with this. Some affects from TSC if untreated are loss of bowel and bladder functions and could eventually not be able to walk. Vincent had his first cord de tethering surgery November 2014, it broke our hearts to see our sweet little boy go through that. After surgery he had to lay flat for 24 hrs to decrease the chance of spinal fluid forming under the skin. It was a struggle but he was a strong boy. After coming home we had to re potty train him, we were told this could happen, some kids regress. He recovered well and was able to be a normal kid for about a year. About 3 months ago he started telling us his legs hurt and he wanted to be carried everywhere. We knew what could be happening so called his neurosurgeon and he sent us for an MRI October 2015, the neurosurgeon said that his cord had re tethered and he would need another surgery. We were told after the first surgery that there was a 1% chance of re tethering. It hasn't been easy for us, just to think of him going through this once again now at 4 years old. We are scheduled for a second opinion at UNC Chapel Hill on December 3rd, but we know with the symptoms Vincent has that this is really going to happen again.
On a side note in the mist of all that was going on, we took Vincent to a pediatric urologist to check if any of this was affecting his blatter control and were told he has a inguinal hernia. We had let it go because we couldn't put him through two surgeries at 3 yrs old, we have noticed it has gotten a lot bigger and scheduled an appointment with the urologist and Vincent is scheduled for November 18th for hernia surgery. His spinal cord surgery will more than likely be in January.
We are not the type of people to ask for help, but this took a lot of thinking about and with the never ending medical bills coming in, we are in need of help. All of the money raised will go toward doctors visits and hospital bills. We appreciate all your help and love you all. Please keep praying for our little boy.

