Braelyn and Gwendolyn - The Background

We thought tracking our journey on this page would be the easiest way for everyone to keep up to date with our girls. We’ve had so many well wishes for both Braelyn McKee and Gwendolyn Marie… We truly can’t thank you all enough.

For those that might not be familiar with our story, we found out that we were pregnant with our first… and second children (yep, twins) late this past winter. By the spring, we were informed that both the twins would be girls. (No truth to the rumor that dad-to-be Chuck immediately needed the assistance of a defibrillator!) In all honestly, we were overjoyed with this blessed news!

Shortly thereafter, we were told one of the twins (at that time “Twin B,” who we’ve since decided to name Gwendolyn) has a form of spina bifida called myelomeningocele.

Unfortunately, this is the most serious form of spina bifida where the outer parts of some of the vertebrae do not completely close during development. Typically, the spinal cord and meninges do not develop normally and extend out through the opening appearing as a sac on the back. Those born with myelomeningocele almost always have some degree of paralysis, although it isn’t guaranteed. This condition, which was first documented 4,000 years ago, accounts for 94% of cases of true spina bifida.

Since that time, we’ve also been told that Gwendolyn has developed hydrocephalus as a result of her spina bifida. This condition is sometimes known as "water on the brain". Basically, Gwendolyn has abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of her brain. This can cause increased intracranial pressure inside the skull and progressive enlargement of the head. However, since her bones are so malleable early on, there’s hope a shunt can be inserted to drain and regulate the fluid after birth, thereby ensuring her skull stays at a normal state.

Speaking of which, we’ve been told that within hours of their birth, Gwendolyn will be taken from her mother and sister at St. Luke’s (near The Plaza) and transferred to Children’s Mercy (near Crown Center). After this short ambulance ride to CMH, Gwendolyn will be scheduled for surgery within a couple of days. That procedure will have a neurosurgeon work hand-in-hand with a plastic surgeon. While the neurosurgeon attends to the spine and nerve endings, the plastic surgeon will close the opening to minimize scaring. Unfortunately, it will take a while to know for sure the level of success of this procedure.

We were told that Gwendolyn’s spina bifida is located low on her back (from approximately her fourth lumbar vertebrae to her sacrum). This is positive as the lower this condition develops, the lower on her body any physical limitation will appear. As she continues to grow and develop in the months and years following the surgery, we’ll begin to learn what lasting effects she’ll have. However, none of the damage that takes place prior to her spina bifida opening being closed is reversible.

Not to be outdone by her sister, Braelyn at one stage of the summer lagged well behind in development. In early July, she was only in the 10th-percentil of her peers in terms of growth. However, after a “prescription” of mom spending 30 minutes in a pool, three days a week, she’s moved much closer to the median. (Dad’s still trying to figure out where he can get a similar “prescription,” especially in the summer months.) It turns out the weightlesness of mom being submerged in a pool up to her neck, increased the blood flow through the placenta, thereby getting Braelyn a more nutrient-rich supply.

Since they’ve been situated for the majority of their development in the womb with Gwendolyn placed above her sister bunk bed style, we’ve come to the decision that Braelyn’s slower growth was merely her way of creating as much space as possible to be sure Gwendolyn stayed comfortable.

With all that being said, Gwendolyn and Braelyn have quite a backing of supporters and seem to be fighters (just ask mom when she’s facing an internal one-two punch from the girls shortly after a spicy meal). As a result, we are still optimistic that both our little girls will lead productive lives.

Our official target date for the caesarean (the theory goes that a natural birth might cause too much pressure on Gwendolyn’s spina bifida opening, causing additional irreversible damage) is going to be Week 38, which is approximately the last week in September. Typically, lungs, which are the last organ to fully develop, are mature at about 36 weeks. So, we are hoping that the girls stay put at least that long. (Of course, if they listen anything like their father does, that might be a difficult proposition.) Ideally, we hope they just chill out inside mom’s womb until the scheduled delivery date. If not, there could be a stay in the infant ICU in both their futures. Still, they obviously don’t know or care about our “plan” so they really could decide to come at any point now.

Needless to say, as updates happen, we’re going to post them here so that you can share in the exciting time with us. We’re far from “techies” so I can’t promise that we’ll have any exciting bells and whistles on this page… but we’ll do the best we can with what we’ve got.

As always, thanks for keeping our family in your thoughts and for everything you’ve each done. Your support means more than you’ll ever know!!!