Late in August, I looked down at my first positive pregnancy test. I remember squealing with delight at the two pink lines on our 88 cent test. For months Derek and I had wished, prayed, and cried for our little baby...and after what seemed like an eternity (but wasn't!) a new little baby was joining our family. It's only been five months, but that feels like a lifetime ago.
I received a phone call a little over a week ago that forever changed our family's life. The doctor explained that my latest ultrasound results were abnormal, that something was wrong with the baby's spine. I have gone through painful things in my life, but I will tell you that there is no pain that can compare to what I felt at that moment. Words like "abnormality" "spina bifida" and "cognitive impairment" bounced around my brain as I sat screaming on our living room floor. I had made an imperfect body for a perfect new spirit that had done nothing to deserve the physical and emotional pain of a difficult life. Derek and I cried together as we tried to digest the news. Surely there was a mix up...that this was someone else's baby.
There wasn't a mix up. We met with my doctor on Friday night. He went over his understanding of the ultrasound as well as talked to us about possibilities. To say we were heartbroken would not even begin to describe it
The wonderful news is that through answered prayers, blessings, and tender mercies, Derek and I have been strengthened and prepared to handle this new calling in the week since. More research has given us multiple options to help our child have the best prognosis. What felt like an unsurvivable trial for us has now become doable. I am convinced that no one could love this child more than we can, and there is no mom on earth who is better for this baby than me. We are going to do this! I still cry, but I cry because of the extreme love I have for this little person. I don't know if it is instinct or what, but the success of this child has become my ultimate goal. There is literally nothing I wouldn't do for his well being. I love being his mommy!
So this is what we are up against: Spina Bifida is an abnormality of the spine, determined in the first 20-28 days of pregnancy, before a mother experiences a missed period. While chances of Spina Bifida can be reduced by taking Folic Acid, our geneticist (and several doctors agree) that like 99% of the time, it is just an abnormality left to chance. I was taking 800 mcg of Folic Acid in my prenatal the whole time I was off birth control before we knew we were pregnant, so baby had enough of the good stuff, but for whatever reason the spine did not "zip" together completely, leaving some spinal tissue in a cystic bubble on the back.
Babies with Spina Bifida have extremely different experiences. Some children grow to be very successful both physically and cognitively, while others will need assistance their whole lives. Paralysis is determined by the location of the lesion on the spine, where as cognitive function is determined by damage to the brain caused by hydrocephalus (spinal fluid in the drain) and issues with the shunt (a device doctors surgically place in the brain to drain fluid from the brain into the stomach).
After doing some very detailed scans, we discovered that our babies lesion is on the lower sacrum. It appears to be somewhere between S3 and S5. This is the best possible outcome (with the least, if any, paralysis). While it is possible that our son could need the assistance of a wheelchair or walker, it is far more likely that he will walk unassisted or with the use of braces on his ankles. Our baby's brain shows structural differences to be expected with strain on the spinal cord, but currently there is little/no sign of cognitive damage. The last few days had prepared us for the worst, but we are starting to see that the worst isn't happening here. Our child seems just as determined as we are to have a happy and fulfilling life!
We are currently investigating two options for our little one. The first of these options is fetal surgery. There are two different fetal surgery options (open fetal surgery, where the uterus is cut down the midline and a pediatric surgeon repairs the spine and then stitches mom closed; and fetoscopic surgery, where the same repair is made but done through scopes.) that we are considering. I have qualified for fetal surgery at Texas Children's Hospital in Houston. If we choose to go through with this option and all my results allow it, this surgery will likely be done the second week of January (very soon!). I would be on bed rest and asked to remain in Houston for the duration of my pregnancy.
The second option is post-birth surgery, where the baby's spine is repaired within the first few hours of birth. The results for this surgery are a little less successful long term, but also less risky for mom and do not impact future pregnancies like cutting into the uterus would. With this option, I would likely be able to carry full term, live in Oklahoma City with Derek, and have time to meet with various pediatric surgeons before the surgery is done. Baby would likely be in the nicu for several weeks after surgery.
Because our child's lesion is so low and his prognosis is so good, it is possible that he will be be denied fetal surgery. We are so grateful that we even have these options, that we are praying that God's will is done here, and we will find joy and satisfaction in whatever option is offered to us.
Friends and family, we love you. We really appreciate the love and prayers that have already been offered on our behalf. I know that this is a calling that Derek, baby, and I have already accepted in our pre-earth life. We already determined that we have enough faith, love, and willingness to make this work...we are just rediscovering that now in mortality! Derek and I have also been realizing that we have had several experiences that have unmistakably prepared us for handling the emotional, financial, and educational aspects of our growing family. God knew that we would go through this experience far before we realized it here. I have never felt a love for anything like I feel for my little guy. Please continue to pray for us to have the strength to meet these challenges, and please pray for our baby that he will be healed; that his life will be put in the hands of capable doctors and that his body will be strong enough to withstand the trials he will soon experience. We are so excited to celebrate this precious little spirit!
