In honor of Spina Bifida Month, October, we wanted to share 31 days of facts/information. This year, we picked the theme of “Things We’ve Learned on our Adventure”
#1 – We CAN do it!
As scary as it is to hear Spina Bifida as a diagnosis, and as scary as it is to watch your child undergo multiple major surgeries, when your child can always turn a smile, outdo the doctors predictions, and overcome some of the greatest odds stacked against them, you realize that your beautiful child knows no different. And just like you would do with any other child of yours, you help them grow, don’t hold them back, love them bunches, stick together through the lows and enjoy the highs.
#2 – We WILL leave the house again!
When we first brought Colten home, his lack of bowels (even more-so than a typical newborn!) caused severe breakdowns on his rump. And while we attempted to change his diaper, clean his bottom, and apply a three-step medication regime, more would just keep coming. It was overwhelming to not only take care of that, but to also make sure nothing was seeping up into his bandage on his back from his back closure surgery. I distinctly recall Richard standing there one day with tears in his eyes saying, “We are never going to be able to leave the house with him!” I’m glad I had the wits about me that day to laugh at this extreme statement, but also the compassion to reassure him that one day, we would be able to. And sure enough, we do!
#3 – Ultrasound Diagnoses are NOT Something to Hang Your Hat On
Data spanning from the 70’s through early 2000’s, from various parts of the world that offer prenatal diagnosis, say abortion rates of fetuses diagnosed with Spina Bifida range from 35-70%. There are no more recent studies but based on recounts from families today with a child with SB, it is clear that too many medical professionals giving early diagnoses simply do not realize the high quality of life many of these children have, and that their life span is near normal.
We received Colten’s diagnosis at 35 weeks along. Even though he was almost fully grown, the ultrasound was still unclear. We were told it was probably sacral, which would be a good thing. Then he was born and the doctor that evaluated him said he would never move his legs and we better get used to a wheelchair. He even gave us the option to not close Colten’s back – which would have equated to letting him die. I absolutely cannot imagine our life without him. And to prove them both wrong, Colten’s lesion starts at around L5 (bottom most lumbar section), but his function is actually less (or higher on the spine) at L3/L4 (mid lumbar). He fell right in the middle of the two very different diagnoses.
#4 – The Life Expectancy of Those with Spina Bifida…
This is probably something people wonder, but are afraid to ask. I’ve seen it masked in many ways as people try to be sensitive, but with medical technology today, people born with Spina Bifida have a pretty normal life expectancy. This wasn’t the case for people born with Spina Bifida and Hydrocephalus before the 1950’s. There were no shunts to drain fluid from around the brain and most of those individuals died. The ones that survived were those without hydrocephalus. Once shunts were used to manage hydrocephalus starting in the 50’s, survival rates increased. Yes, people with Spina Bifida undergo numerous surgeries throughout their life and have a wide variety of medical issues throughout their bodies, but their life expectancy is near normal.
$5 – Folic Acid Cannot Fully Prevent Spina Bifida from Occurring
The exact cause of Spina Bifida is not yet known – in a small percentage of cases, it is related to a genetic abnormality or mutation. But other than that, no one really knows. Research has shown that as a population, we have reduced the number of cases of Spina Bifida since fortifying foods with folic acid. HOWEVER, even women that have taken appropriate prenatal doses of folic acid (400mcg), still can have a child with Spina Bifida. And there are plenty of women in the world not getting enough folic acid that do not have children with Spina Bifida.
#6 – Take Things in Stride
Looking back on the early early days when we first were told Colten’s diagnosis, when he was finally given a shunt, when that first shunt failed, when he needed braces, then bigger braces…. Everything is overwhelming “in the moment”. Looking back, these things seem almost easy now. Probably because we’re so far removed from them. But as things come our way, we try to take it in stride. We try to remember what HE needs, not letting our emotions get the best of us. When it feels rough or tough or extra emotional, I hope we can remember this awesome compilation video of people (lots of kids!) with Spina Bifida, showing the many different ways they “Shake it Off”
Shake it off Spina Bifida Video
#7 – There is No Cure
Depending on the type of Spina Bifida a baby is born with, they may or may not require surgery right away – or ever. Those cases requiring surgery (particularly Myelomeningocele) will have their back closed, but this is not a FIX. Damage to the nerves takes place in the womb and that damage is permanent. Closing a back is not healing Spina Bifida, it is simply closing up the lesion so the child can survive.
#8 – Be Creative with Therapy and Playtime
There are a few things we’ve done at home to promote strength-building and movement for Colten, but SHHHH, he just thinks he’s playing! We don’t have a ton of extra time to do one-on-one therapy with him at home, so we put things around his environment that encourage self-driven therapy whether he realizes it or not! We built parallel bars (all three of our boys get a kick out of them), were gifted some foam gymnastics shapes for crawling/climbing, and we’ve found some outdoor toys that are hand propelled. He have a few toys that he has to pull up to stand in order to play at, or crawl around to put balls in, etc… Here he is outside today on his new Radio Flyer Cyclone! (He’s a little short/small for it, but we strapped some stuff on the base so his legs could stay up since they could not reach the foot rest.)
#9 – Spina Bifida “Happens” Before Some Women Even Know They are Pregnant
In the earliest stages of pregnancy, sometimes before a woman even knows she’s pregnant, the edges of the neural plate begin to curl up toward each other to create the neural tube—a narrow sheath that closes to form the brain and spinal cord of the embryo. As the pregnancy progresses, the top of the tube becomes the brain and the rest becomes the spinal cord. This is all usually complete by the 28th day of pregnancy (pregnancy tests usually detect a pregnancy around day 14). But if there is an issue during this process, the fetus develops a neural tube defect, which among other things, could be spina bifida.
#10 – So Much Equipment!!!!
Starting early, some children get fitted for braces to help support and protect their legs. In addition to that, sometimes children use stationary or mobile standers to get them in a standing position. This helps put weight on their legs, since weight baring increases bone density, helps circulation, and more. Some children use walkers, crutches, canes and wheelchairs. Special socks and shoes are needed for the bracing, extra attachments are usually needed to make the walkers and wheelchairs more usable for the child. This can often be overwhelming yet the many items all create various ways for the child to move around.
#11 – Other Types of Spina Bifida: Occulta
From the SBA Website: It is often called “hidden Spina Bifida” because about 15 percent of healthy people have it and do not know it. Spina Bifida Occulta usually does not cause harm, and has no visible signs. The spinal cord and nerves are usually fine. People find out they have it after having an X-ray of their back. It is considered an incidental finding because the X-Ray is normally done for other reasons. However, in a small group of people with SBO, pain and neurological symptoms may occur. Tethered cord can be an insidious complication that requires investigation by a neurosurgeon.
#12 – Other Types of Spina Bifida: Occult Spinal Dysraphism (OSD)
Infants with this have a dimple in their lower back. Because most babies with dimples do not have OSD, a doctor has to check using special tools and tests to be sure. Other signs are red marks, hyperpigmented patches on the back, tufts of hair or small lumps. In OSD, the spinal cord may not grow the right way and can cause serious problems as a child grows up. Infants who might have OSD should be seen by a doctor, who will recommend tests.
#13 – Other Types of Spina Bifida: Meningocele
A meningocele causes part of the spinal cord to come through the spine like a sac that is pushed out. Nerve fluid is in the sac, and there is usually no nerve damage. Individuals with this condition may have minor disabilities.
#14 – Other Types: Myelomeningocele
From the SBA Website: This is the most severe form of Spina Bifida. It happens when parts of the spinal cord and nerves come through the open part of the spine. It causes nerve damage and other disabilities. Seventy to ninety percent of children with this condition also have too much fluid on their brains. This happens because fluid that protects the brain and spinal cord is unable to drain like it should. The fluid builds up, causing pressure and swelling. Without treatment, a person’s head grows too big, and may have brain damage. Children who do not have Spina Bifida can also have this problem, so parents need to check with a doctor.
#15 – The SBA Spinal Chart
While this isn’t cut and dry – every person with Spina Bifida has unique outcomes to their spinal nerves, this chart is a starting point to understanding what the SB community means when they say they or their child is “L3” or “T11” or “S2”. Wherever a person’s lesion level starts (the highest part on the spine where the lesion begins), is where their SB “starts”. Everything below that is impacted by nerve damage. So if you have SB in the thoracic region, you lose everything below that as well. The higher the lesion, the less function, the more severe the impact of SB. This chart does a great job of giving families with new diagnosis a general starting point to some of the possible muscle function, orthopedic concerns, orthotics, equipment and cognitive/executive function levels.
Colten teeters between L3 and L4, due to his one foot having weak ankle dorsiflexion and the other has no movement at all. Also in the chart, “ambulation” refers to “ability to walk around”. Someone with “community ambulation” would most likely be able to walk around in the community (with or without support such as braces/walkers). A “household ambulator” is someone who can walk in-home but needs more assistance, such as a wheelchair, outside the home. The prediction for Colten (and we all know how accurate predictions for him have been in the past…) is that he will be a household ambulator, and use more mobility support in the community – a combination of walker, crutches and wheelchair.
#16 – So Many Doctors!!!
When Colten turned 2 earlier this month, I updated his medical “tally”:
77 medical appointments
26 procedures/tests (not counting pokes/prods associated with surgery prep, etc…)
158 therapy appointments
15 days spent in the hospital
But I have to say, we are on the lucky end – so many kids have twice this much by his age – some even more than that…
Babies born with Spina Bifida are setup with a whole team of doctors. Some hospitals run “Myelo Clinics” which allow patients to come in on one day and see their whole team of doctors in a 2-4 hours span. Most children with SB see neurosurgery (they watch for shunt issues and check the closure site on the back), urology (most people with SB have a host of issues with bladder function, kidney function, etc…), PM&R (physical medicine & rehabilitation; they are the overseers of all therapies and equipment) – and PM&R comes in (at least where we go) with an Occupational Therapist (think fine motor skills, feeding, etc…), Physical Therapist (gross motor skills), Orthotist (braces), and a Wheelchair Specialist. Sometimes they bring in other therapists or equipment consultants as needed. Some children may see neurology if they experience seizures or other neurological conditions. Some children continue to see Plastic Surgery after the first initial visits if their incisions are troublesome. Sometimes hospitals coordinate Social Workers to check in with all families to make sure their needs are met. Some children see gastroenterologists for digestive complications or bowel issues (most SB kids have major trouble with bowels). All these doctors are seen on a regular basis, especially for the young years of life. Unfortunately there don’t seem to be any clinics or continuity for adults with Spina Bifida. There is no coordination of care or providers and adults are finding this quite stressful and troublesome. As for the kids, add onto all those doctors a regular pediatrician, dentist, and the weekly therapies the children get. That’s a LOT of appointments!!!
Watch for the rest of our posts on Facebook every day during October. We’ll post the second half back here at the end of October!