Ciarlo's Spina Bifida Story: Look at Him Now

Kira was 19 weeks pregnant when she and her husband, Ken, learned that their son, Ciarlo, had spina bifida. For more: fetalsurgery.chop.edu.
Spina bifida is a birth defect in which the spinal column doesn’t close completely during development, leaving the spinal cord and surrounding nerves exposed through a hole in the back. The exposure to amniotic fluid in the womb causes progressive damage to the spine which can lead to a variety of issues, including bladder and bowel problems, club feet, paralysis, and weakness or loss of feeling below the location of the opening.
Kira and Ken were shocked. Their obstetrician told them right away to go to The Children’s Hospital of Philadelphia (CHOP), which has extensive experience with prenatal diagnosis and treatment of spina bifida, including fetal surgery, as well as a specialized Spina Bifida Program.
A C-section delivery was planned in CHOP’s Garbose Family Special Delivery Unit (SDU). The SDU is the first birthing unit located within a children’s hospital designed for healthy mothers carrying babies with known birth defects who will require immediate care after delivery. A day after he was born, Ciarlo had surgery to repair the hole in his spine.
Today, Ciarlo is an intelligent, friendly preschooler who continues to be followed by CHOP’s Spina Bifida Program, where a multidisciplinary team, including pediatric urologists, neurosurgeons and orthopedic specialists, works together to provide the care he needs.

[@FranksieTheBarber]

I was born with spina bifida, the doctor told my parents i would most likely be brain damaged because of the excessive water in my head and i had a 95% chance of never walking, today im almost 18 and i can walk, talk and do a lot that some people cant, i am proud and blessed to be where i am today.

[@Robertm243]

My son has spina bifida and he is the greatest blessing in my life. My wife and I adopted him from birth.

[@dannyhrnndz7053]

They are great parents. I am 51 yrs old I also have spinal bifida. My parents supported me through the good, the bad and the ugly. My life is great. I have to great daughters they are so smart and beuatiful just like their mom. I thank God they have no health issues. My 3 girls are so supportive and understanding. I would not change anything about my life.

[@deborahtawadros567]

My youngest son has Spina Biftia Occulta, along with Duplication 15q Syndrome and Autism. His SBO didn't effect him much. They say he also has mild Cerebral Palsy but I think his muscle problems are related to his other syndrome. His Arnold Chiari malformation corrected itself without surgery. He is now 19 and attending college. He walked unaided around age 2 1/2, did an official run a year later and said his first word at 4 1/2. He has had five stomach surgeries( at age 3 and 4), four foot surgeries, 13 bouts of pneumonia( his first 4 years of life), RSV and numerous other illnesses and procedures. These children, like yours and mine, are miracles and inspirational. God bless and keep up the good work.

[@hayliabrown5886]

One of my closest friends was born with Spina Bifida, she had surgery at birth and fourteen other surgeries throughout the years. She is in a wheelchair, but is one of the brightest people I know, so kind to everyone and a great friend to me.

[@amybrock9840]

They are precious ! My daughter was born with spina bifida , she is very smart as well . She is now an adult . She is such a blessing !

[@skiellach]

As one who is an RN and who had a relative deliver at the SDU @ CHOP, I can attest to the fact that the care is superb!

[@marklee4769]

Ciarlo looks like he has a great spirit, continue the good fight !

[@holywierdo]

i looked for spina bifida cause we had a lecture about it, now i ended up crying because of the video

[@mahmoudgamal2262]

Medlue the same 😥

[@khweziemdletshe1829]

amazing story made me cry

[@beverlydust5381]

I have spina bifida and hydrocephalus I was born in the 1960s I can do most things on my own encourage others to challenge themselves to as much as they can independently.

[@pollyanna38]

I was born with SB in the 70''s. My mom felt the same way, at first. Sweet video!

[@marygarcia2706]

Beautiful story. Had me in tears.

[@ellethebat5624]

He's so freaking adorable 💙

[@Saba.2a]

He so adorable that i want to hug him through the screen .. Aaaaw you so lucky to have him so close to you .. I'm feeling envious

[@vimbaicarr5516]

His T-shirt ❤️ “fearfully and wonderfully made”

[@christenmoon7296]

It breaks my heart to see videos like this my daughter has myelomeningocele the most severe you can have

[@lollipop823]

He's soooo beautiful.

[@jellysparkles6106]

wow. he is so amazing.

[@kylahbeukes9247]

Just absolutely Beautiful!

[@kingmufasa8929]

He is so cute!!!

[@anjymasmil]

Awww! What a cutie pie

[@amompher]

Our son has Spina Bifida as well, Nationwide Children's Hospital did a video on our son and Spina Bifida, including his birth and surgeries. We definitely know where you're coming from!

[@ilovesatan5951]

what a cute and happy little boy+

[@alvaroalas2450]

amazing story

[@crumpfamilyvalues7935]

I had tears but they were happy tears🥺😊

[@SQuiKenya]

He is so cute

[@gracieanderson2207]

My name is Gracie I’m 18 years old I have spinabifida as well and hidraceppalas i have had 15 surgeries my last one was a rode infusion because I had skuleeosis and I’m doing great ( sorry I can’t spell my own dignosis lol)

[@richardhutchison3123]

Somehow she reminds me of Allison Janney as C. J. Craig on The West Wing. God bless your family in 2020!

[@daniellepeters3913]

in witch level he has it?

[@michaelspooner7254]

omg hes so lucky hes a surviver

[@lollipop823]

Crying

[@amieljacob1515]

i have spina bifida and i am the luckiest one in a hospital because i could walk and my doctor was on tv

[@connorjenkinson7430]

i have spine abifitda but it got left until i was one so it got worse

[@blablablabla-hs1nz]

i have it on l5 s1

[@bobjames8907]

He is so much like my brother (who has the same disAPPITY

[@LOTW1]

Hi, I have a friend that is expecting a baby with spina bifida. She feels confused and lost because she wants to have the baby, but the doctors are giving her a grim scenario and her husband doesn't want her to have the baby. She doesn't care that the baby is coming with spina bifida, but her husband attitude and the doctors prognosis are affecting her. What do you guys recommend to her? Does anyone have words of encouragement for her? To my undertanding, the baby has the problem in the lower back very close to the butt.

[@amybrock9840]

Nefario El Zelote these children are a beautiful gifts from God . Yes they are more work then a normal child is . Give the baby life , I'm so glad I did . My daughter who is now an adult is such a blessing . I can't imagine life without her . God has helped thru the difficult times . Choose life !

[@ellishahockham9821]

I have Spina bifida

[@abui2000]

Hi I Have two-year old baby with spina bifida and hydrocephalus. Anybody knows the name of that toy chair in 2:28 or how I can find it?

[@katiecarrascoza4654]

I think it’s zip zac or something my brother has Spina Bifida and has the same one

[@katiecarrascoza4654]

It comes in different colors too I think

[@kimfinley6147]

My brother died from spine a bitfita

[@ellethebat5624]

My sister has this,she's 41 years old :)

[@junemiller2638]

and I am only 11

[@emilypetsche1]

My bf has spina bifida

[@carrieann3959]

I have Spina Bifida!

[@junemiller2638]

my name is kira.miller weird

[@mollydao2173]

I was born with spina bifida

[@roshikhan9593]

My son spina bifida

[@briannadennison1228]

i have spina bifada myself

[@briannadennison1228]

***** you do????

[@briannadennison1228]

so do i

[@briannadennison1228]

i mean i have myelomeningocele

[@briannadennison1228]

+Stephan Darnutzeri mean I have myelomeningocele

[@remieshanance6158]

brianna dennison hmu let's talk

[@jayb4476]

i have Spina Bifida i am the same

[@remieshanance6158]

Leaked JTB24 hmu let's talk

[@katiecarrascoza4654]

Warrios God what age did you like be able to walk? My brother has it and he’s gonna turn 4 and can’t walk still

[@serenityboman9544]

I am 12 yrs old and I have spina bifida