You truly never know what a person is going through until you live it.
I was excited for my 4 month sonogram because this appointment would reveal the gender of our baby. We did not want to find out the gender just yet because we were planning on having a reveal party.
It’s a hard intake hearing that your child is going to be born different. When I received the news that my baby would be born with Spina Bifida, I was lost and clueless. The doctor saw it in my face. I processed by asking what is was. The doctor said, “it’s where the spine doesn’t close, it’s like a zipper it starts in the middle then it zips up and down. For your baby the part that zips down didn’t close all the way. With this condition babies are usually paralyzed from the waist down.” I felt like I just died inside. I stayed quite and just looked at him. The doctor proceeded to tell me my options: “You can carry full term. This is very risky and will require immediate surgery after birth or you can see if you qualify for fetal surgery with this one. It’s a surgery through your navel to close the spine. You would have to go to Houston for this procedure but this gives you a 50/50 chance that he will make it.” I thought for a moment and wondered, why would I want to risk losing my baby? So I told him I’ll just wait until the baby is born. He scheduled an appointment at UT Southwestern to get a MRI and a second opinion.
I remember leaving his office heart broken. I cried once I got to my car. I immediately called my hubby to give him the news. He asked me to open the envelope and find out the gender. I had the envelope in my hand and was shaking. I glanced down and read “it’s a boy”.
Two weeks later my hubby, mother in law, and I went to the MRI appointment at UT Southwestern. I was taken to another room where they started the MRI on my stomach. I felt claustrophobic, I couldn’t breathe and just wanted that to be over. It took about 45 minutes. We waited for about 20 minutes before we were called in to the specialist’s office. She introduced herself and asked if we knew what Spina Bifida was. She turned her computer towards us and said that our son had the most severe form of Spina Bifida, myelomeningocele. She said he had extra fluid in his brain, and likely wouldn’t have any movement from the waist down. I turned and looked at my husband while he turned and looked at me, we both had tears in our eyes. The doctor continued to explain his condition but I couldn’t pay attention. I was lost in my emotions wondering why this is happening to my son, why me, why us. 😭
July 7 was here, I was nervous, scared, but most of all happy. Matthew was born with Spina Bifida myelomeningocele L4-L5 which caused some damage to his muscles and nerves in his legs. At birth we were not able to carry him. I only got to see him for about 10 minutes then he was transferred to a Children’s hospital. The following day July 8, Matthew had his first surgery to close his back. A week later he had his surgery to put a VP-Shunt.
Matthew is now 3 and has been doing great. He will start school next year. Oh my, my baby is growing to fast.
As he gets older my greatest fear is judgment. How will people be around him? Or will ignorant people judge him by his looks.
We don’t like for people to feel sorry for our son because my son is a warrior and just like any other kid. Yes he is different in his way but that doesn’t make him any less than any other kid. Instead, we enjoy the blessing God has sent us and that’s our baby boy. My son is a happy baby with the most beautiful smile he has that contagious laugh. I don’t know what it is about him but he has something special that makes everyone fall in love with him. He is perfect in every way.
#SpinaBifida #SpinaBifidaAwarenessMonth #TeamMatthew #SpinaBifidaStrong #MySBStory