Spina Bifida Awareness: Hudson’s Story

“We don’t care whether it’s a girl or a boy.  Just as long as it’s healthy.”

Is that so?  And what if it’s not?  What then?

My husband and I were hoping to expand our family.  Soon after two heartbreaking miscarriages we found ourselves cautiously happy to be expecting again.  The pregnancy seemed to be going well.  I had horrible morning sickness and fatigue, which was totally normal for me.  We were overjoyed to discover that we were adding another boy!  We named him Hudson.  As weeks passed by we allowed ourselves to become less and less anxious.  Our routine 29 week anatomy scan was scheduled for late December.  Our older kiddos were with us and were excited to see their itty bitty brother on the screen.  I stretched out on the exam table while my doctor smeared warm jelly on my abdomen.  He inspected each body part with the scanner, taking measurements and still images.  All of a sudden he got quiet and started shifting his weight from one leg to the other.  I knew that something was wrong.  In that very instant my pregnancy became high risk.

He printed out the images and directed our attention to our son’s spine.  He explained that there was some sort of sacral mass present and referred us to a maternal fetal medicine specialist in a different town.  The following week it was confirmed that our little guy had Spina Bifida (SB).  I had heard of SB before but was clueless on specifics and what it looked like for our family.  From that point on I had weekly imaging done.  The unknowns were incredibly daunting.  

Spina Bifida is the most common permanently disabling birth defect.  In Latin it actually means “split spine” and the backbone and membranes around the spinal column don’t close properly.  It occurs very early on in pregnancy, quite likely before a woman even knows she is expecting.   According to the March of Dimes, it occurs in 1 out of every 2,500 babies born in the U.S.  There is no known cause and no cure to date.  There are three main types based on lesion level and severity including occulta, meningocele and myelomeningocele.  SB is a snowflake condition, meaning that no two cases are identical.  A large majority of those born with SB also have hydrocephalus, an accumulation of cerebral spinal fluid within the brain.

Since the initial diagnosis my husband and I have learned so much medical jargon in such a short period of time.  I often joke that we both should have earned some sort of honorary medical degree by now!  October is Spina Bifida Awareness month and I’d like to share about our journey.  

The final eight weeks of pregnancy included a whirlwind of medical appointments and specialists.  An in utero MRI provided the most clear idea of what we could expect.  The pediatric neurosurgeon gently told us that Hudson’s lesion was located on the lumbar level of his spine near the second vertebrae.  This would most likely result in leg paralysis and bowel/bladder issues.  He also explained that a lengthy spinal closure surgery would be performed shortly after birth.  We placed our trust in him very quickly and still consider it a blessing that we were connected with him.  He mentioned that Hudson would likely depend on a wheelchair for his primary form of mobility.  At the time it felt like a punch in the gut.  It was heartbreaking and completely overwhelming.

Fast forward to Hudson’s birthday!  After being born via C section at Texas Children’s Hospital in Houston he was quickly whisked away to be assessed.  The very next day he endured the lengthy spinal closure surgery and then spent two full weeks in the NICU.  We now know that he has no feeling or voluntary movement below his belly button.  Through weekly physical and occupational therapy he has developed incredible upper body strength!  He is a bit developmentally delayed but works incredibly hard to accomplish goals.  

Despite four surgeries to date, weekly therapy sessions and ongoing medical appointments he rolls with the punches and always comes out on the other side smiling.  He is an absolute ROCK STAR and brings joy to friends and family.  He never meets a stranger and has already taught his daddy and I so much in two short years.  

Most parents consider their little tot’s first steps as a huge milestone.  We were ecstatic when our little man took his first roll!  This summer Hudson’s first wheelchair was delivered.  He now has more freedom and independence to explore his world and can chase his big sister and brother around!

Fortunately our world is much more ADA accessible and friendly than it ever has been.  There are so many new fantastic pieces of state of the art equipment that we pray Hudson can obtain as he grows and develops.  He may do things different than most but he figures it out and it’s the only way he will ever know.  He takes things off the walls, throws tantrums, sneaks into his sister’s room and has gotten into plenty of mischief just like any typical two year old!  We are so proud of our little guy and trust that the Lord has great plans in store for him.  Hudson is fearfully and wonderfully made (Psalm 139:14) and our long term goal is to bring glory to God through Hudson’s story.