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Our Story


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Our Story


 

Our Story

Our goal of sharing this story is to help others. When Eric and I found out our baby had spina bifida we spent the weekend searching for another family's journey. We couldn't find anything. We needed hope and some expectation of what could come our way. It's incredibly difficult for me to share such personal information without the fear of being judged. Reliving some of these moments and putting it in writing is not easy. Details of the tears and pain we've endured are hard to share. We are not victims of this diagnosis and never have been. We don't feel we've been dealt a bad hand, but look at this as an opportunity. We were chosen for this and now it's our turn to make a difference in this world.  If we can help another family like us, this is all worth it. We want to capture these moments to share them with our daughter one day.  She is exceptional, and we want her to know how her story with spina bifida began. 

About our family

Eric and I met in college at the University of Kansas.  We've been together 14 years, married eight and have lived in Phoenix for 12 years now.  We started a family with our first-born daughter, Brittain in April 2012.  Shortly after, our second daughter, Delaney came along in April 2014 with birthdays only 2 days apart! 

Our lives are the typical crazy with two children. Both my husband and I have full-time jobs and we strive to find that balance every working parent attempts. (DOES it exist?!)  Our careers are a joy to both of us and we feel blessed to love what we do. Our marriage and kids come first and our three little girls inspire us every day.  

Our parents and families are spread throughout the U.S. who we visit frequently each year. Our very best friends, Lauren and Cody, live down the street from us. We've built a solid foundation here in Arizona and even though our lives are nuts with full time jobs, kids, sports activities and friends, we wouldn't have it any other way

Just a tidbit about our amazing daughters:  

Brittain is five and is about to start Kindergarten. (Wagh!)  This girl is smart and sneaky and knows how to get what she wants.  She's a gymnastics star and the best five-year old swimmer I've ever met. She is always working on a way to play tricks on daddy and loves to tell mommy secrets. She never stops asking questions. 

Delaney is three. She has an infectious smile and is always laughing.  She's loud and not graceful or gentle, but has the sweetest heart.  She repeats curse words if she hears them (maybe she learned them from mom). She loves to eat spaghetti and swimming is her favorite activity.  Her meltdowns last a very long time and are only cured with hugs.  She is obsessed with kitty cats and thinks she is one at times.

 
 

The Diagnosis


"..this leads me to believe your baby has a birth defect called Spina Bifida. I wouldn't be telling you this if I had any inkling of doubt..." Dr. Garbaciak - Perinatal Specialist, Scottsdale, AZ

The Diagnosis


"..this leads me to believe your baby has a birth defect called Spina Bifida. I wouldn't be telling you this if I had any inkling of doubt..." Dr. Garbaciak - Perinatal Specialist, Scottsdale, AZ

About our Pregnancy

 
 

we are having a third girl!

We found out we were pregnant on New Year's Day of 17. I was in church that morning and started to feel sick. I went home and took a test that showed positive. I did not believe it. I waited an hour and took another one. Still positive. I couldn't stop smiling. I had New Year's presents for the kids, so I wrapped up a card for Eric...on the back I wrote "We are having another baby this year!" 

In early February we had our first Doctor's appointment that showed we were already at 13 weeks! We waited to share our news until we knew the gender at the end of February.  A surprise gender reveal party at our house with close friends and family shocked us all, (especially Eric who may or may not have been hoping for a boy). 

This pregnancy had been better than my other two so far - I felt great. At 19 weeks I had a standard appointment with a specialist to check the baby for possible birth defects. I'd been to this Doctor twice before with my other two babies, so didn't even consider asking Eric to join me.  It was Friday morning, March 24, 2017. The ultrasound technician took extra time for measurements since I was considered an "at-risk" age of 35. I wasn't even slightly anxious. 

Needless to say, I was blindsided. 

After the ultrasound, Dr. Garbaciak called me in his office. He pulled up the ultrasound photos and said he'd show me what looked good and then run through the pictures he had concerns over. My first moment of panic. What concerns? 

He began with the first photo - baby's skull was shaped like a lemon with a small point at the end of it.  

Next was the cerebellum -  some white space in her brain that was not supposed to be there.

After that, was her left foot - it was pointed inward showing it was clubbed.

Last was her spine - there was a clear opening in her back where her spine would normally connect to the lower half of her body.

He sat back in his chair and said to me, "All of this leads me to believe, without a doubt, that your baby has a birth defect called Spina Bifida. I would not be telling you this if I had any doubt that this was the case." He looked at me. My heart was beating out of my chest. I stared at him, waiting for him to tell me how he would fix it. She was still so little...there was time to make her grow, make her spine grow back together. It would be fine, he was going to tell me how he would fix it. 

I was not processing the information.

I finally said, "What does this mean."

I heard a series of statements and words to follow such as, "your child might not walk, she will always need assistance, she will likely not be able to use the restroom without help..." then there was "wheelchair", "handicapped", then "options...you can terminate this pregnancy..." next was "fetal surgery in San Francisco", then "maybe you should call your husband." 

I don't cry a lot, especially in front of other people, so I sat there numb. I think he was surprised I wasn't losing my mind. I said, "So you're telling me I will not deliver a normal baby." He responded and said, "No, you will not." I asked him that question again, "Wait - so you're telling me I will NOT deliver a normal baby."  His response was the same.  Again he mentioned termination of the pregnancy and laws around abortion. I interrupted him saying termination is absolutely out of the question. He looked at me very surprised and said, "It is?" I let him know my husband and I had the means to take this on.  How - I was not sure. But I was thinking okay, it's not going to be that bad. 

The rest was a blur. Dr. Garbaciak brought me water and asked if I was okay to drive.  He said I was very strong, that I was taking this news very well. At this point I just wanted out of his office.

Finally, I walked to my car. My emotions caught up. I sat in the driver's seat and let out an angry scream. Cursing with frustration, I hit my steering wheel multiple times. Then I started to cry. I called Eric while he was working an event, and I could barely speak. He heard the words Spina Bifida and said "I'm coming home, meet me at home." 

When Eric got home we didn't say much.  We hugged. Both of us crying. We went for a walk, feeling lost. Discussed options and questions. How do we tell people? How would we ever begin to take care of a special needs child? Would I quit my job? How would our kids feel about this? How will our families feel about this? Why did this happen to us? And my own internal thoughts: What did I (as a mother) do wrong in this pregnancy? How were our other two girls so healthy? How did I fail this baby? 

That night we called our parents.  It was difficult to get the words out. There's nothing anyone can say - everyone searches for the right words.  It's the most unexpected news you could relay. I also called my best friend, Lauren.  She knew the second I said "Hi" that something was wrong. Everyone needed time to process. But we felt a little better that we let even a couple of people know the hell we'd been through that day.

Eric was up until 2 a.m. researching Spina Bifida and next steps. He came across a fetal surgery where baby's spine could be closed up in the womb. It seemed like a no-brainier. Why let baby worsen? Let's fix her up now instead of having surgery after she was born. 

We developed a plan. We agreed to explore Children's Hospital of Philadelphia and University of California, San Francisco for the fetal surgery. These were two of the top hospitals that began this operation in the nineties. We'd have to be away from the girls for weeks to even months at a time by investing in this. We just wanted control in some way. We needed to feel like we were doing something. Taking action. Helping.

And so it began...we woke up early the following Monday, post-diagnosis, and I made some calls. The ball was rolling...we were doing something...