Lexi’s Story {Spina Bifida and Fetal Surgery}

I guarantee that if you ever have the pleasure of meeting little Alexis the first thing you will notice about her is her stunning blue eyes.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi is a bright, beautiful, and happy baby and she really knows how to turn on the charm!

What you can’t tell when you first meet Lexi is that her parents Dane and Jahnel found out at 19 weeks that Lexi would be born with spina bifida.

Lexi was born with spina bifida. But before that she had fetal surgery.

Jahnel wrote in her caring bridge journal:

“We live in a culture of instant gratification, but when it comes to medical issues, probably the time when you would most like information as quickly and accurately as possible, you get neither. I keep reminding myself that this is normal, that everything will be ok, and that God is in control and knows exactly what is going on with our little girl and is working everything out for our good and His glory. But I’m not going to lie and tell you it’s easy, its HARD. I just want to wrap my brain around what is next, to plan my life further than one day ahead of time, but I just can’t right now.”

Lexi was born with spina bifida. But before that she had fetal surgery.

Dane and Jahnel made the decision to head to Children’s Hospital of Philadelphia (CHOP) and have fetal surgery.They knew this would give Lexi the best shot at a full life.

Jahnel and Lexi underwent fetal surgery when Lexi was just 24 weeks!

Lexi was born with spina bifida. But before that she had fetal surgery.
The surgery was performed by Dr. N. Scott Adzick, a true pioneer in fetal surgery.

Here is what Dane wrote on the day of her surgery:

“Today was the day that marked a new chapter in the Burgess household. A day that Jahnel and I will always remember for the rest of our days. Today was surgery day. Marked with an early morning commute to the hospital, meeting our morning cab driver who has spina bifida (coincidentally), being the first ones in the operating room and getting a surgery to help our new daughter hopefully stop her spina bifida from damaging more of her nerves even before she is born.”

The surgery was a success and the doctor was happy with the results. Lexi, a little fighter, was born ten weeks later at 34 weeks gestation.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi’s back tells a story. A story of hope, faith, miracles and modern medicine.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi recently celebrated her Butt Day which, in the spina bifida world, means the anniversary of her fetal surgery. Jahnel asked me to capture this with my camera and I was honored to be a part of her special day.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi was born with spina bifida. But before that she had fetal surgery.

Lexi was born with spina bifida. But before that she had fetal surgery.

Alexis is so much more than a diagnosis. She is a daughter, a sister, a miracle, a little girl.

Thank you, Dane and Jahnel, for allowing me to get to know Lexi and capture these memories for you.

If you want to learn more about fetal surgery be sure and check out the documentary Twice Born.

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  2. Wow…what a special baby and an amazing story. I didn’t even know these things were possible. She is beautiful and how wonderful that this surgery was able to help her. Great job capturing her Butt Day!

  3. Renee, thank you for sharing! Oh my gosh, what a heart-warming story, and she’s such a little precious doll baby!!! You captured her story and her strength so well. Nice work. And blessings to sweet little Alex and her family.