Beckham's Medical Journey: Birth Through Two Months

Since having Beckham, our family has been surrounded by an incredible amount of love and support. We have so many amazing people in our lives who continually reach out to check on us, ask how Beckham is doing, and follow along with his journey. And as incredibly grateful as I am for the village surrounding us, I’ve also realized that it can sometimes feel overwhelming trying to keep so many people updated—especially when there are frequent appointments, new test results, changes to his care, and so many little details along the way.

So I started thinking, "What better way to keep the people who love Beckham updated than to create one place where I can share his journey?"

And then I realized it could become something even more meaningful.

My hope is that this blog can not only keep our friends and family connected to Beckham, but also serve as a source of information, encouragement, and support for other families navigating spina bifida, medical complexity, or a new diagnosis of their own. If sharing what we’re learning along the way can make even one family feel a little more informed, prepared, or less alone, then sharing our story is worth it.

Beckham’s Medical History

Neurosurgery

Myelomeningocele

Beckham has myelomeningocele (MMC), an open form of spina bifida in which part of the spinal cord and surrounding tissues develop outside of the spinal canal through an opening in the spine.

Beckham’s myelomeningocele is located in the lumbosacral region of his spine (L5-S1). He underwent surgical closure of the defect on May 28th—the day he was born.

Because the nerves affected by spina bifida help control functions throughout the lower body, we will continue to learn more about Beckham’s individual level of function as he grows.

Chiari II Malformation

Like many children with myelomeningocele, Beckham also has a Chiari II malformation.

Chiari II occurs when structures in the lower portion of the brain are displaced downward toward the opening at the base of the skull. It is strongly associated with myelomeningocele and can affect the normal circulation of cerebrospinal fluid (CSF).

Ventriculomegaly & VP Shunt

Prenatal imaging showed enlargement of Beckham’s brain ventricles, and imaging after birth continued to show mild ventriculomegaly.

Because of concerns about the accumulation of cerebrospinal fluid, Beckham had a ventriculoperitoneal (VP) shunt placed on May 29th, when he was just one day old.

A VP shunt is a small tube that drains excess cerebrospinal fluid from the ventricles of the brain into the abdomen, where the body can absorb it.

Unfortunately, shortly after placement, blood entered the ventricular catheter and interfered with the shunt’s ability to drain properly. On June 8th, Beckham returned to the operating room for a VP shunt revision.

Thankfully, he recovered quickly and was able to come home just three days later.

Brain & Spine MRI Findings

Beckham had an MRI of his brain and spine on May 29th. In addition to his Chiari II malformation and ventriculomegaly, imaging showed several other findings that his medical team will continue to monitor as he grows.

Beckham’s spinal cord sits lower than usual and remains attached near the area where his myelomeningocele was repaired. This is known as a tethered spinal cord and is common in children with myelomeningocele.

His MRI also showed a small fluid-filled area within part of his spinal cord, called syringohydromyelia.

Beckham is scheduled for a repeat MRI on August 7th, followed by an appointment with his neurosurgeon on August 12th to review the results and see if there have been any changes since his initial imaging.

Urology / Neurogenic Bladder

One of the most significant effects of Beckham’s spina bifida so far has been his bladder function.

Beckham has a neurogenic bladder, meaning the nerves responsible for communication between his bladder, spinal cord, and brain do not function normally.

Although Beckham initially urinated spontaneously, he was not consistently emptying his bladder completely.

Clean Intermittent Catheterization

Clean intermittent catheterization (CIC) was started in the NICU after his myelomeningocele repair. Because he continued to have measurable urine remaining in his bladder, we were taught how to catheterize him before bringing him home.

Initially, Beckham was catheterized every eight hours.

After coming home, his catheterization volumes began increasing—sometimes reaching 80–100 mL. To put those numbers into perspective, a bladder capacity of only about 35–40 mL would be expected for a baby Beckham’s age and size, so we were sometimes draining more than twice the amount his bladder would typically be expected to hold. Because of these increasingly high volumes, we gradually increased the frequency of his catheterizations from every eight hours, to every six hours, and eventually to approximately every three to four hours during the day.

Despite catheterizing him more frequently, we continued to see surprisingly large volumes, with his largest catheterization volume reaching 160 mL.

Because of these persistently high volumes, his urology team decided to perform his first urodynamics study earlier than originally planned.

Urodynamics

Beckham underwent his first urodynamics study on July 22nd.

The study showed that his bladder began having involuntary contractions—called detrusor overactivity—very early during filling, beginning at approximately 19 mL.

During one of these contractions, he leaked urine when his bladder contained just 24 mL, with the pressure inside his bladder reaching 88 cm H₂O. To put that into perspective, a healthy bladder should remain at relatively low pressure as it fills, and pressures of 40 cm H₂O or higher are generally considered concerning in children with neurogenic bladder because sustained or repeated high pressures can place the kidneys and upper urinary tract at risk. Beckham’s pressure reached more than twice that threshold during this contraction.

Thankfully, his bladder pressure was not continuously this high. His bladder had normal compliance, meaning it was able to stretch and accommodate urine appropriately as it filled, and his pressure generally remained below 10 cm H₂O during the filling portion of the study. The concern was that when his bladder contracted involuntarily, his pressure could rise dramatically—as it did when it reached 88 cm H₂O. This is an important distinction because the goal is not simply for his bladder to hold urine, but for it to store urine at a safe, low pressure. Repeated episodes of high bladder pressure can place stress on the urinary system over time and potentially put the kidneys at risk.

One reassuring finding from the study was that Beckham had no vesicoureteral reflux (VUR), meaning urine was not flowing backward from his bladder toward his kidneys.

Because of the involuntary contractions and episodes of significantly elevated bladder pressure seen during the study, his urology team recommended adding medication to his regular catheterization routine to help keep his bladder pressures at a safer level.

Oxybutynin

Beckham was started on oxybutynin three times daily.

Oxybutynin helps relax the bladder muscle, decreasing involuntary bladder contractions and helping the bladder store urine at lower pressures. For Beckham, the goal is to reduce the high-pressure contractions seen during his urodynamics study and, most importantly, protect his kidneys over time.

Since starting the medication, Beckham no longer urinates on his own and continues to have large volumes when we catheterize him. This can occur because the medication relaxes the bladder and reduces the forceful contractions that were previously causing him to leak urine. Because he is no longer emptying his bladder on his own, catheterization remains an important part of making sure his bladder is emptied regularly.

Moving forward, his urology team will continue closely monitoring both his bladder and kidney health. Beckham will have another bladder and kidney ultrasound on September 1st to evaluate his urinary tract and make sure his kidneys remain healthy. He will then have a repeat urodynamics study on October 2nd to see how well the oxybutynin is working—specifically, whether it is reducing his involuntary bladder contractions, lowering his bladder pressures, and allowing his bladder to store urine more safely.

Protecting Beckham’s kidneys will remain one of the biggest priorities of his lifelong urologic care.

Pulmonology / Sleep

Because children with Chiari II malformation can sometimes experience abnormalities in breathing during sleep, Beckham underwent a sleep study while he was in the NICU.

His sleep study showed obstructive sleep apnea, but the results were reassuring enough that Beckham does not currently require oxygen or respiratory support at home.

We had Beckham’s first outpatient pulmonology follow-up on August 5th. For now, we will continue monitoring his breathing at home, with plans to repeat his sleep study within the next few months to reassess his obstructive sleep apnea.

Orthopedics & Mobility

Spina bifida can affect muscle strength, sensation, joint positioning, and mobility differently depending on which nerves are involved.

Thankfully, Beckham continues to demonstrate movement in both of his legs. However, his movement appears to become more limited farther down his legs. While he moves his hips and knees, we have not seen him move his feet on his own, and there is still uncertainty about how much strength and sensation he has in his lower legs and feet. Based on what we have observed so far, there is concern that sensation in his feet may be significantly decreased or possibly absent.

We’ve also noticed that his left foot tends to turn inward and downward and is stiffer than his right. His toes tend to remain pointed downward, and the movement and positioning of his left leg appears different from his right.

There is concern that this positioning could represent a mild clubfoot or another orthopedic difference related to his spina bifida.

We are anxiously awaiting a formal assessment by the physical medicine and rehabilitation (PM&R) team during his first spina bifida clinic appointment on September 1st. They will be able to better evaluate his strength, movement, muscle tone, range of motion, and sensation and help determine whether he needs additional evaluation, therapy, bracing, or orthopedic care.

As Beckham grows, his medical team will continue monitoring his hips, knees, feet, muscle strength, range of motion, and overall motor development. We know that mobility can look very different from one child with spina bifida to another—and at only a few months old, there is still so much we don’t know about what Beckham’s mobility will look like long-term. For now, this is one of those areas where we will continue supporting his development, celebrating what he can do, and letting Beckham show us what his body is capable of as he grows.

Development & Therapies

Because children with spina bifida can benefit from early developmental support, Beckham was referred to First Steps, Indiana’s early intervention program.

Beckham completed his initial First Steps developmental assessment on August 6th. We are scheduled to meet with his First Steps team on August 10th to review the results of his assessment and determine which services and therapies he may qualify for.

Physical therapy will be particularly helpful for supporting his strength, positioning, range of motion, and motor development as he grows.

He was also referred for vision services after a developmental vision screening suggested he could benefit from additional evaluation and support.

Just like any baby, we are watching Beckham reach milestones at his own pace while making sure he has access to the therapies and resources that can help him reach his fullest potential.

Feeding & Growth

One area where Beckham has absolutely thrived is feeding and growth.

After his surgeries in the NICU, he quickly progressed from tube feedings to taking full feeds by breast and bottle. His feeding tube was removed within the first several days of life, and he has continued to breastfeed well since coming home.

Despite everything his little body went through during those first few weeks, Beckham has continued to grow beautifully.

And after so much of his first two months revolved around diagnoses, procedures, appointments, and things we needed to monitor, watching him simply eat, grow, smile, and be a baby has been one of the sweetest parts of bringing him home.

Hope for the Future

When Beckham was first diagnosed, so much of the future felt unknown. And in many ways, it still is.

There are things we know will be part of his life for a long time—specialists, catheterizations, medications, imaging, therapies, and continued monitoring. There are other things we simply won’t know until he grows older and shows us what his body is capable of.

But one thing I’m learning is that living with uncertainty doesn’t mean living without hope.

In just two short months, Beckham has already taught us so much. He has undergone three surgeries, spent his first two weeks of life in the NICU, and accumulated more appointments and medical terminology than most people encounter in years. But when we look at him, those things are not what we see first.

We see our sweet baby boy.

We see his smiles becoming more frequent, the way he watches our faces, the little sounds he’s beginning to make, how content he is snuggled against us, and the personality that seems to emerge a little more every day.

His diagnosis is an important part of his story, but it will never be the entirety of who he is.

As we move into the next chapter, there will undoubtedly be more appointments, tests, decisions, and unknowns. I’ll continue sharing those updates here—not only so the people who love Beckham can follow along, but also in hopes that another family searching for answers might stumble across our story and feel a little less alone in theirs.

For now, we’re taking this journey one appointment, one milestone, and one day at a time—learning as we go, celebrating the good, navigating the hard, and continuing to discover the incredible little person Beckham is becoming.

And through all of it, we remain incredibly grateful for everyone who continues to love him, pray for him, cheer him on, and walk alongside our family.

This is only the beginning of Beckham’s story 💛