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Spina bifida beautiful

It was like any other beautiful, sunny day in Texas. My husband and I had just settled down in Texas, and we couldn’t wait for this day. It was time for my 20-week pregnancy scan, and just like any other expecting parents, we couldn’t wait to find out if we were having a little boy or girl. This was our first baby together, so it’s safe to assume we were pretty excited.

We arrived to our appointment to begin the ultrasound, and I remember the technician asking if we would like to know the gender of the baby. We both said “yes!” The technician started the scan and almost immediately said “congratulations, you’re having a girl.” We were ecstatic. However, the scan started to take longer than we expected, and we couldn’t figure out why the technician kept trying to get pictures of the baby’s head. We couldn’t see anything abnormal, and were ready to move on and meet with the doctor.

We finally met with our doctor for the first time. She came in and introduced herself to us, and then things took a turn. She informed us that she saw some concerns with the scans, including a lemon-shaped head with an abnormal amount of fluid in the brain. Our doctor wanted us to visit with the maternal-fetal medicine doctor right away to get an extra scan and rule out any other concerns.

The next thing I know, I’m crying as we’re waiting for another scan with the maternal-fetal medicine team. Again, this scan seemed to take all day, and it felt like an eternity was passing by because I just wanted answers. Finally, the technician was done scanning and spent a lot of time looking at our baby girl’s back. The doctor came in and informed us that our daughter had spina bifida. At that very moment, it felt like my heart stopped. As the doctor provided us with more information on the condition and our options, it all felt like a blur.

No parent expects to go into a routine pregnancy scan to be told their baby has a birth defect that will impact them for the rest of their life. No parent wants to be told their baby will never walk, run or wiggle their toes, and will be wheel chair-bound for the rest of their life. The doctor informed us about our options and prepared us to make a decision.

Next, I’m doing the amniocentesis to confirm our diagnosis. In the next week, we’d be heading to Texas Children’s Hospital to begin the process of finding more solutions, including seeing if we were good candidates for open fetal surgery. We found out we were perfect candidates for the surgery, and by my 25-week mark I had an in-utero open fetal surgery repair for my daughter’s lesion.

It was a difficult three-month recovery, and it took a very long time for us to see how the results of the surgery would impact our little girl after her birth. Finally, as we neared my 37-week mark, she decided she could no longer wait and made her entrance into the world. I decided to go to the hospital that morning because I felt a lot of tightness in my belly, and wasn’t sure if this was from contractions. Turns out, this was a very good choice! My contractions were five minutes apart.

I arrived to the hospital at 8 a.m. and our daughter, Adelynn Rose Storheim, was born at 12:08 p.m. weighing in at 5 pounds, 3 ounces and almost 18 inches long. Adelynn came out crying and kicking her little legs. It’s hard to describe what that moment felt like in words. As the doctors were holding her, my mom was able to take pictures for me to document the birth. In that moment, my heart melted as I became a mother. I felt so much love for our tiny little daughter who had just entered the world.

Adelynn spent 10 days in the NICU, which was the hardest part of the entire process for me. I had to leave my baby at night to pump and get some sleep, which was hard. I wanted to do nothing but sleep in those uncomfortable chairs with my baby all night. We were blessed to have only stayed for 10 days, and were sent home with flying colors.

Like I stated previously, we were originally given a very bleak outlook on Adelynn’s life regarding the disabilities she would have. I can proudly say, 19 months later, she is thriving and defying the odds of spina bifida every day. Yes, we have our hurdles to jump over as a family, but we never lose hope and faith that everything will turn out for the better. Adelynn is now walking, has full mobility down to her tiny little toes and brings so much love and light to our lives.

Everything about my pregnancy and our daughter Adelynn has been a blessing in disguise. Adelynn constantly reminds us that she’s a miracle, and proves how far medicine has come. I will be forever grateful about moving to Texas when we did, because it gave us the best opportunity to be taken care of at Texas Children’s Pavilion for Women. What they do for families is life-changing, and I can’t thank them enough for everything they did for us and for all of the patients who walk through their doors. My husband and I look forward to watching Adelynn continue to defy the odds of spina bifida.

Post by:

Megan Storheim, mother of patient