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Diagnosis Day, also known as “D-Day” in the special needs community, marks the day you find out your child has a disability.  I remember getting my daughter’s spina bifida diagnosis like it was yesterday.

If I close my eyes, I can see everything playing back in my head like I am there. My D-Day was May 5, 2015.  Cinco de Mayo.

Anyone who knows me, knows I am obsessed with Mexican food.  I had morning, noon, and night sickness for the entire first half of my pregnancy and it had just eased up so I could start eating. 

Spina Bifida Diagnosis

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I had planned to go out to eat with all of the ladies at my office.  We had been planning it for weeks.

No more morning sickness and a holiday where is perfectly okay with you overindulging on Mexican food.  Perfect, right?

Before the lunch date, I was supposed to go to my OBGYN for a prenatal appointment. We were going to have an ultrasound to determine the gender of our baby.

We were planning on finding out with the rest of our family later in the week at our gender reveal party.  It was so exciting.

Everyone on both sides of our family had been talking about it for weeks.  It was my parents’ first grandchild and my husband’s first grandchild in about four years.  EVERYONE was ecstatic.

My husband, like normal, accompanies me to the doctor’s office.  We sign in and sit in the waiting room.

While we are waiting, we are discussing our baby.  Who he/she will look like, what sports they would play, would they have my temper and their Daddy’s picky eating?  Whose hair would they have?  Whose eyes?

We were sharing all of our hopes and dreams about our baby.  If it was a boy, he would have to play football (I mean we are in the south- hello SEC fans!!).

If it was a girl, would she be in dance and gymnastics?  The list goes on and on.  It was a normal conversation among expectant parents.

We had a girl name picked out and were still debating on boy names.  I was getting really antsy about not having a boy name picked out.

I had been pressuring my husband to decide on a name.  I told him we could not go to the gender reveal party without having a boy AND a girl name.

I wanted to start calling the baby by their name and not just it, he, or she.

I didn’t care if the baby was a boy or girl.  I knew I wanted to have a second child someday, and it didn’t matter to me whether or not we had a boy or a girl first.

I did secretly hope we were having a girl, since that was the only name we managed to agree on.  It was a perfect name.  If it was a girl, she would share a first name with my husband and a middle name with me.  It couldn’t be more perfect.

The ultrasound tech finally called us back to her room.  We were so excited.

We were both on cloud nine.  I laid down on the chair and the tech started looking at the baby.  She immediately asked if we wanted to find out the sex of the baby.

We both said not right now, we want you to put the sex in an envelope for our gender reveal party later.

She was doing a very thorough exam of the baby.  She was looking at everything and taking all kinds of measurements.

She talked us through everything she was doing.  My husband and I were listening in and out of what she was saying.  We were so full of excited chatter about the future of our baby.

The tech started looking at the baby’s spinal cord and brain.  She said she was taking some additional photos for the doctor to check on the baby’s health.

I immediately thought there was something wrong.  I immediately pushed the thought out of my head thinking, this was totally normal.  No big deal.  They just think they see something.

I know a lot of children and none of them had big medical issues.  I even remember thinking the likelihood of my baby having something wrong was slim to none.  They were just being extra cautious.

I asked her if she can see anything.  She immediately went into a spiel about the doctor is the only one who could interpret the ultrasound.  My husband and I looked at each other from across the room.

What ?? Okay.  This just got weird.

I said does the doctor think something is wrong with our baby?  She looked at me with a weird look on her face.  It was like she was shocked that I was asking that question.

I was like okay something is weird here, but I am too happy to find out the gender of the baby and finally eat Mexican food for lunch without nausea to worry about this lady and her weird looks.  So we kept talking ninety to nothing.

She finished the exam and we were sent to the exam room to wait for the doctor.

We didn’t have to wait long before the doctor came into the room.  He immediately said so you don’t want to know you are having a boy?  I got so mad.

I was like this dude is a moron.  Come on, man!! We just told you we don’t want to know what the gender is until the party.  He immediately followed it up with or are you having a girl.

I was like good grief!  I thought he told us the baby’s gender.  I was about to get mad.  I guess that was his weird sense of humor was a way of breaking the ice.

I overlooked it because I was so excited about lunch and then the gender reveal party.  It consumed my thoughts.  These two things were the only thing I could think about all week.

He started talking super fast and said so we thought your baby had a problem with the test results from the 15-week genetic testing and it turns out that is the case.

I was like what?? Seriously?  I got so angry.

I said so you found out there might be a problem with our baby FIVE weeks ago and you are just now letting us know?  He looked shocked and surprised.

He said no one called you and told you?  I said would I be looking this shocked if I knew?  Do you think I would have let this go if I had known?

I couldn’t have waited five weeks to find out if something was definitely wrong with my baby or not.

He stammered through the worst apology I have ever heard in my life.  There is no excuse for this kind of unprofessional behavior.

I got aggravated and said regardless, tell us what you think is wrong with the baby.

He said I think your baby has spina bifida.  I immediately thought I had heard of that term in passing somewhere, but I had no clue what it meant.  I thought it sounded horrible, like a death sentence.

The rest of what he said was a blur.  I zoned in an out listening to the rest of his explanation.  I heard paralyzed, wheelchair, and many more medical terms and things I can’t remember.  I honestly was so shocked I can’t remember hardly anything he said after saying spina bifida.

He said he sees about 3 cases a year in his practice.  We are being referred to another hospital to see a high-risk OBGYN called a maternal-fetal medicine doctor to know for sure.  He said his nurse would set up an appointment and we should have one within the next week.

I felt like a zombie.  I couldn’t form a coherent thought.  I couldn’t quit crying.  I thought this was the worst possible news the doctor could have told us.

I felt sick to my stomach.  I cried in the parking lot of the doctor’s office crying and sobbing like someone had died.

I wept for the child I thought I was going to have.  The child I felt like I deserved to have.

I was so upset.  I was in complete shock.  I remember thinking that I wanted the baby to stay inside of my womb where it was safe.  I didn’t want him/her to come out in the world with a lot of heartache and medical issues.

I kept thinking why did this have to happen to my baby?  If this is a statistical thing and affects 3 people a year from this practice, why did I have to be one in three?

Why couldn’t it have been someone else?

Why me? Why MY baby?

I thought well, there won’t be any gymnastics or football in this kid’s future.  That made me cry even harder.  I cried for days and weeks on end.

Of course, I tried to go back to work.  I thought maybe if I ignore this, it will go away.

Maybe I can just work through this.  Maybe.  I got to work and everyone in the building was looking at me with a big cheesy grin on their face.

Well did you find out about the baby?  Boy or girl?  I bypassed all of the stares and questions and went into my boss’ office.

He had always been like an older father figure to me.  I went into his office, closed the door and started ugly crying and said something is wrong with my baby.

It has spinal bifida.  (Yes, I thought it was called spinal bifida.  Which is not in fact called that.  The correct term is spina bifida.)

After consoling me, he told me to go home.  There is no way you can work today.  Just go home, cry some more, dry your tears and come back tomorrow.

I remember walking out of his office and everyone was staring at me.  They were wondering what in the world is going on?

Isn’t finding out the gender of your baby supposed to be exciting?  What could possibly be wrong?  I didn’t want to talk to them.  I just wanted to cry in a dark hole and not return.

I went home and cried some more.  In between crying, I Googled spina bifida and started reading.

For some reason, I also Googled images of spina bifida.  Which I do not recommend doing by the way.  There are a lot of babies before their spinal repair and the pictures are very graphic.  Not something an expectant mom should see for sure.

I couldn’t find anything positive about spina bifida.  I kept reading about how many surgeries they could have, what other medical concerns they could have.  I was so distraught.

How did you find out about your child’s diagnosis?  Let me know in the comments below.

 

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