Saturday, February 13, 2010


Its hard to believe that it was a year ago this month that our world turned upside down. At least thats how it felt at the time. The morning of February 19th 2009 the only feelings we had walking into that ultrasound were feelings of excitement. We were going to hopefully find out the gender of our babies. It didn't matter to us either way but we couldn't wait to start planning the nursery and picking out names. The only fear we had at that time then was that the babies wouldn't cooperate and we'd have to wait possibly another whole week to know. We were 18 weeks. If you know us or follow ths blog, you know what happened but I feel a need to share this story as its been on my mind a lot lately.

It seems a lifetime ago in many ways now but I can instantly recall the emotions I felt like it was just yesterday. Shock, fear--a LOT of fear, sadness, worry. Not at all the way we expected to feel at learning we were going to be having two boys. We couldn't enjoy that then. We were instead dropped into what felt like a bottomless pit with words swirling around us like "neural tube defect", "open spine", "paralysis", "fluid on the brain", "poor quality of life" and much much more that I am intentionally blocking out. Thats how we were introduced to the new world of spina bifida and we were terrified.

Mark and I took the rest of the day off from work, and the next day too. We went home alternating between feeling numb and feeling like someone just took the floor out from underneath us and we could see no place to land. It was hard to breathe. We clung to each other and our closest family and friends. Over the next number of weeks we cried, tried to forget, got angry, tried bartering with God, and then finally accepted and prayed like crazy for strength, guidance, and the best outcome for our sons. All the while we just fell more in love with our boys and a new fierce feeling of wanting to protect them.

I knew nothing of Spina bifida and soon immersed myself into everything I could find out about it. I used to think this diagnosis would define our lives, would only take away things from Alex, take away things from all of us. I know see how wrong I was! Don't get me wrong, I'm human. I still worry....a lot sometimes. I wonder what kind of mobility he'll have, how hard he'll have to work. Will he be resentful that he has to work so hard at every little movement while his brother can do these things so effortlessly? Will he feel left out when able bodies peers are running around? Will this shunt hold up or will he need surgical revisions? Will his kidney reflux come back? Will we have to learn how to cathertize him? These are just some of the things that we will have to get through in time. Even with these worries though I have to say for the most part spina bifida really is much more in the background of our lives, not the forefront. (honestly the severe prematurity issues were the most terrifying and to this day we still feel like we are fighting and overcoming the remnants of that).

Okay, sorry back to spina bifida. Alex is ohhhhhhhhh so much MORE than spina bifida. Alex is amazing. He has been a fighter from the very beginning. He has defied the odds of severe prematurity, he has come through four surgeries in his nine months of life, the first one ---the major one at just a pound and a half when the doctors really didn't think he would make it through.

He is such a fighter yet he has the sweetest disposition, he has this light up his whole face (and my heart) smile, the cutest giggle and this piercing see all the way into your soul stare. I love watching him try to shove his whole hand in his mouth all the while chattering away. I love the look on his face when he's rolled over and gotten out of "tummy time". I love how he always reaches out to hold his brothers hand.

I love how he reaches up to touch his daddys face and you think he's being so loving, until he goes in for the swipe of the glasses.

I love just recently how he sticks out his tongue just a little bit and smiles at the same time when he's happy.

In truth, even though I will never like it, many more things have been given to us than taken away because of spina bifida. I have such an appreciation of every little milestone, and not even milestones that others would think of. I notice things that we likely would have taken for granted if we'd not been placed on this road (a wiggle of a toe, rolling to the side, grabbing a toy, pushing himself up on his arms), just some of the things that we really weren't sure if he'd be able to do.

I have a much stronger faith, and a feeling of closeness with special family and friends, whether we like it or not hard times can draw people together. I've also found a whole new network of new friends and support. People I would have likely never met had it not been for this journey, and now are people I share my deepest worries with and celebrate every high of their family's as well as our own. I have not yet met any local families affected by SB so I depend on my on line family all the more. We are quite a collection of people and the internet has been the lifeline that ties us together. It has been because of SB that we have met but I feel blessed to know them for much more than that.

Finally I have to say that I feel like I'm doing a lot of growing, a lot of stretching as a person. I'm sure that I would have done some of this as a new mom anyway but spina bifida, as well as their severe prematurity has challenged me quite a bit more. Its not been easy, its not been comfortable but I think I"m going to be a stronger person because of it, I might even hesitate to say a better person. Either way just being Alex and Nicholas's mom, I'm the happiest I've ever been, even with spina bifida in the background!

I'm very late in doing this, since spina bifida awareness is technically in October. But better late than never, right? Besides bringing awareness and education should be more than just one month out of the year. So here is some background information:

The following has been taken from the spina bifida association:

What is Spina Bifida?

Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States.

Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Spina Bifida means cleft spine, which is an incomplete closure in the spinal column. In general, the three types of spina bifida (from mild to severe) are:

1. Spina Bifida Occulta: There is an opening in one or more of the vertebrae (bones) of the spinal column without apparent damage to the spinal cord.

2. Meningocele: The meninges, or protective covering around the spinal cord, has pushed out through the opening in the vertebrae in a sac called the "meningocele." However, the spinal cord remains intact. This form can be repaired with little or no damage to the nerve pathways.

3. Myelomeningocele: This is the type that Alex has. This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back. In some cases, sacs are covered with skin; in others, tissue and nerves are exposed. Generally, people use the terms "spina bifida" and "myelomeningocele" interchangeably.


Approximately 40% of all Americans may have spina bifida occulta, but because most experience little or no symptoms, very few of them ever know that they have it. The other two types of spina bifida, meningocele and myelomeningocele, are known collectively as "spina bifida manifesta," and occur in approximately one out of every thousand births. Of these infants born with "spina bifida manifesta," about 4% have the meningocele form, while about 96% have myelomeningocele form.


The effects of myelomeningocele, the most serious form of spina bifida, may include muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs, loss of sensation below the cleft, and loss of bowel and bladder control. In addition, fluid may build up and cause an accumulation of fluid in the brain (a condition known as hydrocephalus). A large percentage (70%-90%) of children born with myelomeningocele have hydrocephalus. Hydrocephalus is controlled by a surgical procedure called "shunting," which relieves the fluid buildup in the brain. If a drain (shunt) is not implanted, the pressure buildup can cause brain damage, seizures or blindness. Hydrocephalus may occur without spina bifida, but the two conditions often occur together.


Although spina bifida is relatively common, until recently most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live. Quite often, however, they must have a series of operations throughout their childhood. School programs should be flexible to accommodate these special needs.

Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some require catheterization, or the insertion of a tube to permit passage of urine.

In some cases, children with spina bifida who also have a history of hydrocephalus experience learning problems. They may have difficulty with paying attention, expressing or understanding language, and grasping reading and math. Early intervention with children who experience learning problems can help considerably to prepare them for school.

Mainstreaming, or successful integration of a child with spina bifida into a school attended by nondisabled young people, sometimes requires changes in school equipment or the curriculum. Although student placement should be in the least restrictive environment the day-to-day school pattern also should be as "normal" as possible. In adapting the school setting for the child with spina bifida, architectural factors should be considered. Section 504 of the Rehabilitation Act of 1973 requires that programs receiving federal funds make their facilities accessible. This can occur through structural changes (for example, adding elevators or ramps) or through schedule or location changes (for example, offering a course on the ground floor).

Children with myelomeningocele need to learn mobility skills, and often require the aid of crutches, braces, or wheelchairs. It is important that all members of the school team and the parents understand the child's physical capabilities and limitations. Physical disabilities like spina bifida can have profound effects on a child's emotional and social development. To promote personal growth, families and teachers should encourage children, within the limits of safety and health, to be independent and to participate in activities with their non-disabled classmates.

Source: NICHCY


caryanne said...

I remember hitting the one-year-mark of Ben's CP diagnosis. What a year that first year was! (although nowhere near as crazy as your first year). It was basically an emotional rollercoaster. The 2nd year is WAY better. Rewarding even.

You are an amazing Mom! And you're right. Alex is WAY more than his diagnosis. He's Alex. Your son. And he's awesome.

Thanks for posting this information about SB. I really didn't know very much and have been meaning to do some research (since "meeting" you).

Jill said...

So true Holli! When you're pregnant, the diagnosis consumes you, but once they're here or kids are so much more than 'the dreaded spina bifida'. It's funny though that even thinking about my son's Diagnosis Date brings back all of those painful emotions immediately. It only goes up from there though. :)

wrensmommy said...

thank you so much for posting this... your great attitude and love for your little boy are so uplifting.

i often worry about wren, how she's doing developmentally, and "what if she's behind" or whatnot.. and it's easy to forget what a blessing every little life in this world is!!! regardless of all the rest, she's always a bright shining light to our days and a comfort to us in her sweet sleep at night.

i appreciate the reminder to be thankful for what we have and to focus on the blessings of every situation..

wrensmommy said...

that should be *boys in paragraph one. :)