Hi My name is Jennifer and I am the very blessed and proud mother of an
almost 2 year old, Nicholas, who was born with Myelomeningocele Spina
Bifida, Hydrocephalus and agenesis of the Corpus Collosum. When I was
pregnant, we were told that our child was very sick. That he had "water on
the brain" and his ventricles were dilated. We were told he would be
blind. We were told he would be paralyzed from the waist down, have
numerous learning disabilities, and have zero quality of life. Our
neonatologist stared at the ultrasound, shook his head and said as he
handed us a ripped piece of paper, "Here is the phone number to a late
term abortion doctor. I highly suggest you make an appointment."
When I tell you that not one doctor gave us hope, I am not exaggerating.
As a matter of fact, the feelings I got from the doctors and specialists
was more so that if I chose to have my son, I was not doing the right
thing by him. They made me feel like I was carrying a monster. I cried
everyday, I felt so scared, angry and confused. I just wanted somebody to
tell me that it was ok to keep my baby, that everything would be ok. I
searched online, and that scared me more. I found myself fighting with
everyone who thought they knew better than I did when it came to MY child.
Ultimately, I decided to fight for my child. I did not care what the
doctors, specialists, friends and family members had to say. This was my
baby, my decision and one I would have to live with for the rest of my
I felt my baby boy kicking me, strong kicks too, as if he was telling me "mom, don't give up on me! Fight for me!" I came to the conclusion that
God chose me to mother this special child. I didnt care who was with me or
against me, I didnt care what he was going to look like, I put all my
fears aside and I did what I knew in my heart that I needed and wanted to
do, I was keeping my amazing baby and he and I were going to fight
At 35 weeks, my water broke. Nicholas was born on June 16, 2012 via
emergency C section. He had his Spina Bifida repair surgery 12 hours after
he was born, and ten days later due to the spinal fluid buildup in his
head, he had a VP shunt placed in his skull. He was the most beautiful
baby I had ever seen, he was my little fighter. Ill never forgot before he
went into his spine surgery, his neurosurgeon telling us"he may not move
his legs after this surgery, prepare yourselves" I looked at him, and I
told him, "He will feel his legs, please take care of my baby as if he
were your own" Ill never forgot the faces of the nurses and doctors when
Nicholas moved his legs for the first time after his surgery.
Nicholas will be 2 in June, and last month he started independently
walking! (Click HERE to see a video of his first steps. )Nicholas is so handsome, and such a joy I could not imagine my
life without him. He is a lover of life and people and animals and he is
the sweetest little boy! He is delayed about 6 months in gross motor
skills, he is on target with fine motor skills and is extremely smart! He
yearns to learn, loves books and loves going to the park! He can count to
13, he knows his colors, shapes, alphabet, numbers, animals and animal
sounds. He is quite the comedian and has this amazing personality! When
people meet him, they do not even realize how much he has been through and
how many serious disabilities he has.
At his neurosurgeons office last week, the surgeon watched nicholas zoom
around the room, curious and simply being a normal almost 2 year old. The
doctor had tears in his eyes and said "I cannot take all the credit for
this, God played his part" It was a moment where I honestly felt like he
was thinking to himself, this is why I do my job. He called my son
miraculous, but, my son is not the only one! I have heard many stories
where we are told the worst, and it ends up being the complete opposite!
There are scary moments, there are weekly therapy sessions and early
intervention, but its such a small price to pay for such an amazing
blessing! I thank God every single day that I was chosen to be Nicholas'
mother, and that I was strong enough to fight for my son. He proved a lot
of people wrong, and is an inspiration to many. I want to share our story
because I want to be there for others, I had nobody to give me hope, so I
want to be that person for other families.
to Spina Bifida
-The support, information and encouragement provided by the PPFL parents is not meant to take the place of medical advice by a medical professional. Any specific questions about care should be directed to a health care professional familiar with the situation.