D-Day

February 21, 2018 is a date that I thought would be like any other, but ended up being the day that completely changed our lives.  My world was one way before February 21 and completely different after February 21.

In the crazy world we now belong to, February 21 is what they call our "D-Day."  Diagnosis Day.

Two days before, I had gone in for my routine 20-week ultrasound.  The anatomy scan.  You know, the one where they check your baby over from head to toe.  Our big concern was whether or not little girl would have a clubfoot like Miles.  We were praying for straight feet.  We find that pretty funny now.

Everything looked completely normal to Daniel and I on the scan.  We made the ultrasound tech look for clubfeet multiple times, and her feet and leg bones looked fantastic.  Daniel asked the ultrasound tech, "So do you see ANYTHING that looks concerning?"  She looked us straight in the eyes and said, "No."  We still wonder whether she lied straight to our face, or whether she honestly didn't see it.  The latter option is honestly unlikely.  We left our scan completely elated that the baby girl we had waited so long for was perfect.

Two days later, it's February 21.  I was eating lunch at school with some teacher friends, and I received a phone call from my midwife.  We knew that the radiologist still had to look at our ultrasound scans, but of course you never think anything will come of that.  She asked me if I was alone.

That was when my heart skipped a beat.

I told her yes and stepped into the hallway.  She told me that the radiologist had found some problems  with our baby's brain and spinal cord.

That was when my heart stopped.

I tried to get more information out of her.  Brain and spinal cord?  Those are some seriously important structures.  Was she not going to make it to birth?  Was she going to die??  Is this something fixable???  My brain was racing, but she only told me that the baby had "T2 Malformation."  She told me they would be sending me an email in a little bit with the specific findings from the radiologist and some "helpful links."  She told me I would need to see a specialist of some kind.

I hung up and immediately freaked out.  I walked back into the lunchroom and told my friends that something was wrong with my baby and I didn't know what to do.  The tears were coming and I just knew I needed to call Daniel.  I raced out of the lunchroom and dialed his number.

Daniel immediately knew something was wrong by the sound of my voice, and through sobs I told him that something was wrong with our baby--with her brain, her spinal cord.  He just kept saying, "Oh no.  No. No." over and over.  I told him the "T2 Malformation" phrase and told him I would go check my email and we would talk in a little bit after we both start Googling.

I ran into the school office, told the secretaries what was happening, and they took me into a back room so I could have a minute to breathe before going back to my class.  I took a few minutes to compose myself and went back to my classroom where a group of kids waited for me.  They got started on a project, and I ran to my office to check my email.  It was there and this is all it said:

"I hope by the time you get this I will have been able to talk with you by phone.  The results of your baby's ultrasound were not normal.  The radiologist states that the images were consistent with Chiari II Malformation:

"There is a sacral meningomyelocele, ventriculomegaly with cerebellar compression ("banana sign"), calvarial ("lemon sign").

I recommend we schedule a visit with a maternal-fetal medicine specialist for a more detailed ultrasound and consultation regarding how to best treat your baby."

That was it.  No wonder we couldn't find much about "T2 Malformation."  It is actually called "Chiari II malformation."  I started researching Chiari II and then plugging in "meningomylocele."  I scanned website after website, and that is when an incredibly scary phrase started popping up again and again.

Spina Bifida.

I thought, that can't be it.  No way.  I panicked and sent Daniel a text--"Holy crap it could be indicative of spina bifida.  I am going to throw up."  Daniel kept Googling as well, and then called me on the phone. "I think you might be right."

No one even told us our kid had spina bifida.  We had to figure it out ourselves, which was a bit frustrating.  It's like they were afraid to say it.  I get that though, because I still hate saying "spina bifida" out loud.  Sometimes when I actually say it, after days of not crying, the phrase brings me to tears.  

The next week was filled with more doctors appointments than I think I have attended in my lifetime.  We transferred all my care to the University of Utah (midwives only work with low-risk pregnancies, and now I was miles away from that), which has a fantastic spina bifida clinic.  We were given a giant binder full of information.  We found out she had the most serious (but also most common) type--myelomeningocele.  We found out she might not walk.  We found out she probably won't be able to control her bladder or possibly her bowels.  We found out she might need a shunt right after birth. We found out a lot of scary things that sent me into a cascade of tears each time a new possibility was laid before us.

My attitude varied from hopeful and positive to complete despair...sometimes within minutes.  I can only describe it as a roller coaster.  Daniel and I spent time mourning the loss of what we THOUGHT her life was going to be like.  We joined facebook support groups and had our neighbors from our church come give us each a blessing of comfort.  Friends and family immediately rallied around us in so many ways--I will be doing a whole blog post on that later.

HERE is a link that can give you some of the basics of spina bifida.  I feel like I've had to become an expert in a few weeks.  I'm obviously not, but it sure feels that way.  

The big decision we had to make was whether to pursue fetal surgery as an option.  Her spinal defect has to be closed no matter what, but the choice is whether to do that before or after birth.  We talked extensively with U of U doctors about the options and her specific case.  Her "lesion level," as they call it, is at L4.  That is the number of her vertebrae where the defect begins.  With each additional vertebrae affected as you go up the spine, her chance of walking unassisted or with little assistance goes down.  

L4 is a good place to be, respectively.  There is already about an 80% chance that she will walk unassisted or with little assistance (like ankle braces, or AFOs).  This was fantastic news.  We learned that fetal surgery might increase that chance even more.  It also might cause her Chiari II malformation to reverse before she is even born, which could help her be less symptomatic when she is born.  It could also reduce the likelihood that she will need a shunt when she is born--although unfortunately her ventricles in her brain are already rather large (17mm and 18mm), which makes this benefit unlikely.  

Still, we decided to pursue surgery for the other benefits, even if the shunt issue was off the table.  After calling a few centers that do the surgery (U of U does not do it yet, but plans to in a couple years), we decided on UCSF Benioff Children's Hospital in San Francisco.  They were one of the original hospitals that did the surgery and participated in the MOMS Trial that studied the benefits of fetal surgery.  We felt good about going there.  The surgery can only be done before 26 weeks, and I was almost 22 weeks on D-Day.

So that is where we are now.  We spent 3 days here in SF undergoing evaluations and attending meetings with 9 different specialists.  Luckily she has no other problems we can see, other than the spina bifida.  Yay...no clubfeet.  ;)

It's Saturday night and our surgery is on Tuesday.  There is a lot more to say, and I am going to be blogging and vlogging (HERE is a link to my YouTube Channel) about this journey.  Reading other moms' blogs and watching their videos has been massively helpful to me in the past few weeks.  I want to try to be helpful to other moms who are going to have their own Diagnosis Day. 

We love our little girl more than we can say.  While things are not going to be the way we thought, they are still going to be wonderful.  Daniel and I know that she is going to bring blessings to our family that are difficult for us to understand or imagine right now.  She is a special little girl, and she is ours.  Take that, D-Day.