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Featured Family: Adel and Justin

posted Jul 29, 2015, 7:09 PM by Adel DiOrio   [ updated Jul 30, 2015, 6:48 AM ]
Our Featured Fetal Surgery Family​ is Adel and Justin.

We are from Michigan and had Open Fetal surgery at Children's Hospital of Philadelphia (CHOP) in 2012 (Post Trial). We received our diagnosis at our 19 week ultrasound. It was a Thursday evening, the last appointment of the day. The ultrasound tech got really quiet, excused herself from the room for entirely too long, and returned with my OB who spoke very softly and calmly. She had already run out to the parking lot to stop the maternal fetal medicine specialist who was on her way to the car. The MFM and the OB explained to my husband, my older son (who was just attending to learn the gender of his new sibling), and me what "the fruit signs" were and what spina bifida was. I had some experience as I am a teacher, but my husband had no experience. The only words I could muster were, "It's bad. It's very bad."

We had our amniocentesis the next morning, first thing. We researched and we waited. We called and we waited. It felt like forever, but the amnio came back confirming the diagnosis of an open neural tube defect with no other anomalies. We decided on the Children's Hospital of Philadelphia. Their experience and outcomes spoke for themselves. We headed to Philly the week before Thanksgiving and went through four days of evaluations. Yes, four. I was the first mom to receive this surgery with essential hypertension, and they had to test and control for everything. At the end of day four, we were candidates. We came home, had Thanksgiving dinner, and headed to Philly for, well,­ as long as it would take.

We were scared and overwhelmed, but we had faith and decided this was the best thing we could do for our child. His name is Justin. This was the best thing we could do for Justin ­to give him the best chances for motor function, to avoid the Chiari II malformation, to try to avoid the need for a shunt. We decided that we needed to leave no stone unturned. We had fetal surgery on a chilly November day. It went well, although they did have to resuscitate Justin at the very end of the procedure as his heart rate fell off. Imagine...palpitations on a baby of 1.5 pounds.

Bed rest was not easy. It felt like forever until Justin was born, and in hindsight, it was the blink of an eye. 89 days after his first surgery, Justin was born at 36 weeks and 2 days gestation. We spent three weeks in the NICU overcoming typical preemie issues. Then, we got to take our entire family of four home. Justin’s lesion is at level L2-­L3. 

Justin loves to eat blueberries, throw a baseball with his brother, walk in our neighborhood, eat Italian food, and get into general mischief. He is, after all, a toddler. He likes putting pennies in his piggy bank and tickling his family. He loves to play in water: the lake, the hose, the bath, you name it. He likes Mickey Mouse and Wreck It Ralphand his favorite book is Chicka Chicka, Boom Boom.  

Justin's interventions for hydrocephalus: VP (Ventriculoatrial) Shunt now removed, ETV (Endoscopic Third Ventriculostomy).
Justin's current mobility equipment: Walker, Orthotics (AFOs), Prescription Shoes
Justin's other health complications associated with spina bifida: Tethered Cord, Neurogenic Bladder/Bowel

Additional Information: Justin had a tough run during his first couple of years. He had 13 surgical procedures in total, some of which were grouped onto a single day (totally nine surgery days). He contracted e. Coli meningitis. He had a tethered cord release and had a dermal sinus tract and a dermoid cyst removed. He had a scar revision, and one of the muscles that had to be moved, in fact, died and had to be removed. But, meet the boy. He is resilient, funny, clever, happy, and all boy! 

He lives by two mottos: 
From his team: "Huh, I have never seen that before."
To the world: "Just try to stop me."

If you stumbled upon this site because you are expecting a child with spina bifida, the medical information here may be intimidating. I was intimidated. I still am intimidated. BUT, when you have your baby, regardless of whether fetal surgery is right for you and your family, your baby will be this amazing creature so loved, so perfect. All of this will become your new normal, little by little. You can do this. You can be the parent to your child. He/she will just have his/her idiosyncrasies, just like any child. No child comes with a money back guarantee or an owner's manual. You have the backing of a dynamic community of parents and the greater SB community. We will survive and thrive together.