Levi is a sweet, funny, and determined two-year-old little boy. He resides in Gibsonia, Pennsylvania with his mom, Julie, his dad, Brandon, brother Noah (7) and sister Chloe (4). Levi’s favorite things are pasta, climbing the stairs, and singing Itsy Bitsy Spider. You can often find him outside searching for spiders and different water spouts while singing along to the nursery rhyme! Levi’s zest for life is contagious and people often find themselves with giant smiles while around him.
Julie and Brandon were alerted that something could be going on with their baby during a routine anatomy scan. Julie attended the appointment with her husband and shares, “We were sort of joking around with the technician and being very light hearted during the appointment and all of a sudden the technician got very quiet and almost sort of put us in our place a little bit. She reminded us that this was an anatomy scan and not just for fun to find out whether the baby is a boy or a girl. All of a sudden she put her hand on my hand and she said ‘And I’m seeing some concerns with the baby’s brain and the baby’s spine.’ She just kept saying, ‘I’m sorry. I’m sorry. I’m sorry.”
At this point they had the doctor come in and that was when the doctor informed Julie and Brandon that the baby had spina bifida. The doctor was very kind and according to Julie, he dealt with it very well, saying that typically children with spina bifida are in a wheelchair, but that typically they are not affected cognitively and it is more of a mobility issue. Julie and Brandon walked away from that appointment shocked.
After that initial appointment they were referred to a local maternal fetal medicine specialist. Julie shares, “The only way I know how to describe this appointment was that it was very cold and very chilling. The doctor basically said your baby has a birth defect from head to toe, in every organ. Basically, told us that our baby is not going to make it and if they do make it then it would be such poor quality of life. It was a completely different story from saying our baby had spina bifida. The doctor said that the baby had Trisomy 18 and that it was fatal.” With their heads spinning, Julie and Brandon met with infant hospice staff to come up with a birth plan. “It was this weird time where we weren’t sure if we were telling people we were planning a baby shower or a funeral. It was a really really dark time,” confesses Julie.
Friends urged Julie and Brandon to get a second opinion in Philadelphia after hearing about a good experience that someone they knew had there. They decided to give it a shot and traveled to Philadelphia to a fetal diagnosis and treatment center where they experienced two days of exhaustive tests to see if they could identify exactly what was going on and maybe receive a glimmer of hope for their baby. Once the testing was completed the doctors sat them down and said six words that breathed the hope they were looking for into Julie and Brandon’s hearts – “Your baby is going to live.” Along with spina bifida, the baby had VACTERL association, which is a rare disorder that affects many body systems. In addition, it was determined that Levi had hydrocephalus, which comes along with spina bifida, and Chiari malformation.
The doctor in Philadelphia explained that Levi would have some medical and mobility issues, but that he would be a typical child. Julie says, “Our neurosurgeon was the first one that sat down and asked, ‘May I ask you does your baby have a name?’ It was a totally different experience from all this doom and gloom that we had previously experienced. I remember him even saying, ‘he is your child and he is going to do everything you needed to do with your other children.’ He said that we would need a car seat and a crib and one day he would even drive us crazy like the other kids.”
They were not able to qualify for fetal surgery due to Levi’s other diagnoses, but Julie decided to relocate to Philadelphia so they could treat him there once he was born. She had to be there two weeks prior to the planned c-section and ended up spending two months total in Philadelphia. Levi was born at the hospital and then was in the NICU for a month. While he was in the NICU he was diagnosed with Craniosynostosis, a birth defect of the skull where parts of the skull fuse prematurely. There are different types of Craniosynostois and Levi’s type is called metopic, which occurs when the metopic sutures fuses before birth. Julie shares, “It was a whole other big surgery. They had to zig zag a huge scar ear to ear, take his skin down, cut his skull off, reface his skull, put it back on, and sew it back together.”
In Levi’s first year of life he has had a total of seven surgeries. Levi is paralyzed from the waist down, but is able to move his left leg from the hip a little bit. Being paralyzed from the waist down has not slowed Levi down whatsoever. He army crawls at home and also cruises around in his Bella Bumba, a special wheelchair designed by a non profit. He also has high braces and is learning to walk with a walker and is currently being introduced to forearm crutches.
When you see Levi, you see a little boy who loves life. He zips around in his Bella Bumba with no hesitation and he belts out “Itsy Bitsy Spider” for all to hear. Levi is a little boy who questions the assumptions in life. Mobility is not defined by simply walking with two legs. Living a full and beautiful life is not reserved only for typically developing individuals. Levi’s way of living will challenge you to change your perspective and it will open your eyes to the importance of ensuring society is creating an open and equal space for people of all abilities.
Time to get loud shouters!
Throughout the month of October we will be shouting love for Levi and three other Pittsburgh area families. It is a great honor to be able to tell Levi’s story and we hope you will join us in getting to know him and his family.
So click here to shop now where every purchase will go towards the purchase of a van that is better equipped to transport all of Levi’s equipment. You can also start a monthly subscription and shout love for great families each month!
Join us in shouting loud for Levi!