Expecting and the Unexpected Vol 4// Spina Bifida, Fetal Surgery, and One Mother's Incredible Courage
Hi friends! I am really excited to share this next story with you in my “Expecting and the Unexpected” series. I am so impressed by this mamas courage as she walked through an incredibly difficult season, finding out that her daughter was diagnosed with Spina Bifida. Thanks for taking the time to read and I know you will all be as encouraged by Michelle’s story as I was.
-Kelly
November 23rd, 2016- the day before Thanksgiving is the day that my daughter was born for the first time. It was the day where doctors and nurses got to see what my baby looked like, and I had to wait three more long months to meet her myself. That was the day where 61 minutes forever changed her life.
Two weeks prior to that date, during my 20 week ultrasound, my husband and I found out that our daughter had Spina Bifida. Spina Bifida is when the spinal cord doesn’t develop properly very early on in pregnancy. This creates an opening in the back, exposing the spinal cord to amniotic fluid, resulting in nerve damage which can lead to bowel and bladder problems and paralysis or weakness in the lower extremities, among other complications. This diagnoses came out of left field and turned our world upside down. We had an almost two year old son who was completely healthy so the thought of anything being abnormal never really crossed our minds.
I distinctly remember the atmosphere in the ultrasound room feeling so cold and void of any excitement. Before we knew anything was wrong, we could sense that something was not right. There were no pictures being printed of her hands or feet for us to take home. There was no small talk or chatter. There was just silence and tension. After what felt like an eternity, the doctor finally came in and broke the news to us that our daughter had Spina Bifida. My body immediately went into a state of shock and I don’t recall much of the conversation except the doctor telling us we had “options”. Before we went down the road of “options” my husband and I made it clear we were not going to terminate this pregnancy just because she was not perfectly formed in the world’s eyes. We were then offered an option that came as a surprise, but felt it gave our unborn daughter the best chance at living a normal life- fetal surgery. Fetal surgery is when an unborn baby is operated on while in the womb. A c-section-like surgery is performed and the baby is exposed to the world to have surgery. Once the surgery is over, the womb is sewn back up and the baby is put back to continue to grow until delivery.
With tears in our eyes and feeling numb, we left the appointment with more questions than answers. Why did this happen to us? Did I do something wrong? What is the purpose in all of this? The following days were some of the hardest days we had been through as a married couple. We were feeling emotions that we couldn't even put into words. Sometimes it felt easier to take out our anger with the situation on each other. Other times we just held each other and cried.
There was no time for us to fully process the news we just learned. Within a week of receiving the diagnosis we were down at the Children's Hospital of Philadelphia (CHOP) for two days of extensive testing to determine if my unborn daughter and I were candidates for fetal surgery. While I was laying on my back in the MRI machine, thoughts were racing through my mind. I was trying to process how I ended up here, if this was even really happening. There was such a heaviness and sadness that wouldn't leave. I wanted to go back to the way life was before we found all of this out. A few weeks ago we felt on top of the world- we put an offer on what we thought was the perfect house and we were in the last stages of finalizing our mortgage. We had a closing date at the end of November. But now we were questioning our decision- what if our daughter was paralyzed? Should we back out of buying a two-story house-- how will she get upstairs? An hour later the MRI was done. My thoughts came back to reality and I was on to the next set of testing.
My unborn daughter and I were eligible for fetal surgery. My husband and I had a huge decision to make. Fetal surgery is a fairly complicated and risky procedure that offers great reward, but at the cost of great risk. We were at the crossroads of not having surgery, which would eliminate some risks, such as her being born extremely premature, but the risk of not having the surgery would probably mean she would be paralyzed from the waist down. I was questioning myself if I would be able to live with the decision of not having surgery so I wouldn’t have to endure hard times, but the trade off would be the chance my daughter would never be able to walk. I was wrestling with the thoughts of how the surgery would take a toll on my body. I would have to take medication around the clock- waking up in the middle of the night to take it so I wouldn't go into preterm labor. I would have to be on bed rest for the last three months of my pregnancy and wouldn't be able to walk or stand for longer than ten minutes and I couldn’t lift anything. I was trying to think how my one-year old son would process why his mommy wasn't picking him up or holding him tight when he longed for that affection. Our family would have to leave the comforts of home and the support of friends and family in the middle of this stressful time to move to Philly- just in case there was an emergency. We wouldn't get to celebrate Thanksgiving, our sons second birthday, Christmas or New Years in our new home. My husband would have to carry all of the weight of the family on his shoulders. He would have to sacrifice and lay down his life for those three months to not only take care of me, but also our son. We decided we were willing to take on all of these challenges and unknowns so our unborn daughter could live the best life possible.
The following week I was being wheeled down the hospital hallway into the operating room where my daughter would be born for the first time and where doctors and nurses would get to see what she looked like. Up until I went under anesthesia I kept hoping I wouldn't have to go through the surgery, that some how everything healed overnight or that this was just a dream; it was all purely selfish. I didn't want pain, or scaring, or have to put our family through this upheaval. But my love for this little person who I only knew by her kicks and jabs seemed to outweigh all of my selfish desires. Sixty-one minutes later, the hole in her back that exposed her spinal cord causing irreversible damage was closed. The movement in her legs was preserved and her spinal cord was protected for the first time since conception. This hour and one minute changed the course of her life forever.
The following three months of waiting were some of the hardest and longest days and months. I felt so conflicted inside- I wanted to meet my daughter, but I also didn't want her to be born too early. On February 14th, 2017- Valentines Day, 5 weeks before her due date, we were told we would meet our daughter in three days! My husband and I felt this huge sense of relief and burden lifted off of our shoulders. We had a renewed sense of energy because we made it to the finish line!
Our daughter, Sparrow Rose, is now one year old and is doing well. Her name came from a family favorite hymn, His Eye is on the Sparrow: "I sing because I'm happy, I sing because I'm free, for His eye is on the Sparrow, and I know he watches me". Rose was chosen in memory of my late grandfather's love for his rose bushes and also our prayer for her life, that she will leave the sweet aroma of Christ wherever she goes, just like a rose leaves behind a beautiful aroma. My hope and prayer is that she will see the beauty in her scars and imperfections. God knit her this way for his grand purpose and I pray she leans into Him during the times of challenges and possible questioning of "why me?". I can't understand fully the challenges she may face- I was never in that situation, but the one that made her, the Creator, does understand. "I give thanks to You, for I am fearfully and wonderfully made; wonderful are Your works, and my soul knows it very well."
-Michelle Crespo
Follow Michelle on IG at: @belle.crespo
Related links: Info on Spina Bifida | Info on CHOP fetal surgery
Photo Credit: amandadanziger.com
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