You can’t yet hear my voice but I have one. I am real. I am loved. I am Me.

My oldest brother Matthew noticed right away, “Hey, it looks like she has all of her body parts.” I do. But I am also unique in so many, many ways. First, I was born February 28, 2023, only 26 gestational weeks old and weighing only 1lb, 3 oz. I am a micro-premie. Second, a week before I was born, I underwent my first surgery–fetoscopic surgery because, third, I am also a Spina Bifida baby.

After three boys, my mommy and daddy were thrilled to see this message pop up on the gender blood test website.

You would have thought that I was the first girl to have ever been born…ever! My mama kept thinking, “this pregnancy” is different. It sure was. She was cramping, bleeding and very sick. She cried when she thought she might be losing me very early on. But she didn’t lose me. I am right here. My heart beats stronger and stronger every day. And yet, this pregnancy, with me, will be very different and very difficult.

I don’t like it when my Mama Rosa cries. She cried the day (January 16, 2023…MLK Day) we had our Anatomy Ultrasound when I was only 20 gestational weeks old. First, the male ultrasound technician pushed down very hard when doing the exam and it hurt Mama. A few hours later, Mama received a telephone call from the office of her OB/GYN Dr. Megan Karjola. She wanted to see mama that evening at 5:00pm. Mama new something was wrong. While my daddy stayed home with my three brothers (they can never be left alone), my Mama and Grandma went to the doctors office. The ultrasound technician detected clues I may have Spina Bifida. Mom cried. The technician thinks I have a “lemon head.” That is not a nice thing to say. Grandma said so! To be sure, Dr. Karjola arranged for Mama and Me to have a special 3D ultrasound appointment at The Ogden Women’s Center. One week later, on January 24, around noon, it was confirmed. I have a birth defect called Myelomeningocele (pronounced my-low-ma-nin-jo-seal)—Spina Bifida, the severe type. She cried some more. So did daddy.

You do not need to tell me I am rare. Of course I am. In the United States, only 1 in 2,758 children born have this condition. And what makes all of us unique, is that we are all very different. The Spina Bifida Association describes us this way: “Every person affected by Spina Bifida experiences their own journey. Spina Bifida is often referred to as the “snowflake” condition as no two people are affected the same way.”

Well, enough about me. Are you kidding? This is ALL about ME!

OK, ok. On the very same day (January 24, 2023) I had my 3D ultrasound, Mama was presented with three options.

Option #1 Soon after birth, at Utah’s Primary Children’s Hospital, a neurosurgeon closes the opening on my spine. Pros: low pre-term birth rates. Cons: rate of Hydrocephalus and brain shunts increase significantly.

Option #2 Fetal surgery performed at Utah’s Primary Children’s Hospital by a neurosurgeon who would take me out of mama’s uterus and amnio sac, suture my spine then place me back inside Mama. Pros: significantly lowers the chance of Hydrocephalus and other neurological issues. Cons: Pre-mature labor significantly increases.

Option #3 Fetoscopic Surgery for Spina Bifida pioneered at The Texas Children’s Hospital in Houston, Texas. Pros: least invasive type of surgery with the best results for both Me and Mama by lessening the chances of pre-term labor, Hydrocephalus and other neurological complications like paralysis. Cons: It happens in Houston, far, far away from Home.

My parents weighed the options. Like Olympians, we went for Gold. I expected nothing less. There was an amniocentesis done and more of Mama’s blood was taken. She gives it all for Me.

We waited for the call that invited us to Houston. It came. We went. Grandma came too. We stayed in the Best Western Sure Stay.

We flew back home and waited. More blood and labs. Waited. A nice nurse named Amanda phoned Mama on February 14, Valentines Day and told her I was qualified for the surgery and we needed to be back in Houston the next day. This time, my Aunt Sarah came with us. Sarah took us to all of our pre-surgery appointments, to draw more blood, to find more labs, to the Houston Zoo, and checked us in for surgery. She stayed with us for 10 days. Thank-you Aunt Sarah.

This is where I thank all the awesome “everyones” at Texas Children’s Hospital in Houston who “fathered” and “mothered” the Two-Port Fetoscopic Spina Bifida repair in U.S. Dr. Belfort and Dr. Whitehead collaborated with physicians from Vall d’Hebron University Hospital in Barcelona to develop a fetoscopic method using two 4 mm uterine incisions. Thank-you to the hundreds of parents and their unborn babies who participated in the surgical trials. Thank-you to the Canezaro family for being the “firsts” on June 29, 2014. Doctors and nurses had 9 years of practice on others before working on Me. Surgery took 6 hours. My back is sutured and zipped up fine. I am pleased with the outcome.

I know. I know. I was as surprised as everybody. I mean that. Everyone was very surprised when this happened! Here is the thing….things happen. Even though I was doing great after surgery, Mommy wasn’t doing so good. By the time this happened, Aunt Sarah was back home; Grandpa was here in Houston ( we were all planning on returning home together on Friday, March 10); Mama was discharged from the hospital, Mama was in a lot of pain; and unbeknownst to anyone, mama (very early in the morning) began experiencing serious labor contractions and I was about to Be. Mama just wanted to use the bathroom…mama’s water broke…mama was in way TOO MUCH PAIN….mama just wanted to push something out and….20 minutes later, I Was. Hey, why prolong the inevitable?

I really did create a big fuss. Even for Me, a wee bit of a “drama queen,” it really was a “what the heck???” kind of moment. For someone being so tiny and fine, my arrival made a lot of big people move very, very fast. Including my daddy far away. Even he moved very fast and was here before I knew it. I am not saying there was a star over Houston and a heavenly concord of angels announcing my birth, but the phrase “She is Born” was broadcasted quickly to the powers that be. And like a star, I was under bright blue lights (Billilight Photo Therapy) for my first few days of life. Not even Elvis can say that.

I am not all that thrilled with my first home being in a NICU, being pricked with needles, lines in and out of me and so much beeping, but I do appreciate all the attentive and professional NICU care. The nurses and I get up close and personal. Under my doctors orders, they keep me alive.

Don’t believe me? Read this titled, “A Day in the Life of a NICU Nurse.“

Here is a better photo of my fine facial features. I don’t care too much for the tube, but a girl has got to breathe.

My Daddy had to eventually return home to work and take care of my brothers. Here is proof he really did need to get back home. I haven’t really had to deal with them yet.

Grandpa left too… so, Grandma came to see me. She is, of course, obsessed with me. She agreed to be my editor in writing. She doesn’t have anything else to do.

A few days before Grandma arrived, my Mama was placed in The Ronald McDonald House on Holcomb Blvd, just a 20 minute walk from the hospital. They are providing all housing needs for her: a lovely room, complimentary food (lots of food), complimentary laundry, and a complimentary shuttle back and forth to the hospital. My Mama says the place is amazing. I believe her. She also says that millions of people donate to the Ronald McDonald Fund and volunteer their time as well so she doesn’t have to worry about the costs of housing and food when it is important she only worries about Me. And she does. Worry about me I mean and everyone else she loves who are now very far away from us.

They really do things bigger and better in Texas. I want to be bigger and better too.

Besides Me, Mama is pretty much dong this alone. She was “alone” during her labor and delivery and now she will be “alone” again. Grandma came down on Saturday, March 11th and was planning on staying for 2-3 weeks but on Sunday evening she knew she was sick and left Mama to quarantine herself in a hotel room. She was able to see me twice before she fell ill. She doesn’t want Mama to get sick. And there is no way in Hell (they say this a lot in Texas), that she wants me to be infected, so she is leaving tomorrow (March 16th.) This type of “bug” can linger for awhile so she is leaving. If Mama were to get sick, not only would she be quarantined but she wouldn’t be able to visit me for a long time. Not taking any chances. Just like Mama, Grandma can really cry. She doesn’t want me to talk about it too much, so “that is all I have to say about that.”

Back to Mama. I am her new Job. Her resume is below. It is hard work.

Her “job” is stressful. The worry never goes away. I am a premie. There are issues. I need to breathe better on my own. It would help a whole lot. Like you, I know God lives and He Hears Us. My Mama and I both need and thank-you for your love and prayers.

Grandma is finally going to bed. We will write more later.