Sometimes it brings us a smile to think about it. Sometimes it haunts us.
This week, I was brought back to the past.
Back to the day. May 24.
That is the day I will never forget. The day everything as I knew it-life, love, fear, hope, joy, pain, etc., etc., etc., changed forever.
On that day, John & I were told we were expecting a baby girl, and that she would be born with spina bifida. And we were given three choices. Terminate, surgery after birth, or enroll in a research study currently being conducted called MOMs (Management of Myelomeningocele Study). We were given lots of options as to our baby’s prognosis, no answers, sick stomachs, & a CD in hand with information on the study. We went home to mourn, cry, pray, & process.
And then we began to prepare.
The choice we were faced with was whether or not to participate in this research study. It involved two groups-a prenatal surgery & a postnatal surgery group. The decision of which group we would participate in was not up to us, but a computer. We would have to fly to Philadelphia for an evaluation, and if it was determined we qualified to join the study we would be randomized to one group or another. If we randomized to the prenatal group, there would be no time to return home, & I would undergo general anesthesia the next day while neurosurgeons repaired the open area on Zoe’s back. Yes, this involved opening the uterus to access the baby, complete the surgery, and close everything back up again. We would have to remain in Philadelphia for the duration of the pregnancy & delivery. The majority of the prenatal babies were born premature, but we were told there was a 50% reduced risk that Zoe would need a shunt.
We had initially considered this as a serious option for us; Vanderbilt was participating in the study, and we felt we could make arrangements to live in Nashville for the rest of my pregnancy if we were chosen for prenatal surgery.
And so, the praying began.
We prayed for peace, for direction, for clarity. We were desperate for the Lord to make this decision for us, as it would disrupt not only our lives, but Faith’s life as well. She was 13 months old. I knew we had to get it right. I could not live my life with regret. I felt as though I were having to choose between my children. One who was still a baby herself & needed momma, and the other who was facing challenges from even before birth, and she needed momma too.
The decision, we felt, was made for us a few days later when I received a phone call that Vanderbilt was no longer participating in the MOMs study. If we wanted to still participate, it would be necessary for us to move to Philadelphia temporarily. Faith could not come with us. We knew that would not work. Not for just a 50% less chance of needing a shunt. We felt this was the Lord closing the door for us on this decision. We chose to move forward with having Zoe’s surgery after birth at Vanderbilt with one of the best neurosurgeons in the country. She would be born, have surgery, recover in NICU, go home & start the next phase of our journey.
That was until this week, when the final results of the MOMs study were published. Perhaps you saw a segment on the news about the story. I was quite a bit distraught at the way spina bifida was portrayed in the media this week. As though kids who do not have fetal repair have no life. Words like devastating were used. Maybe that’s what ABC or NBC would see if they looked at my sweet Zoe. But I do not. I see a happy, content, chubby-cheeked four month old who is learning to laugh when she “flies” in the air, loves to be held, and has her own opinions when it comes to what she wants 🙂 I do not see pity, or fear.
Yes, I see a child who will have to work harder than most to walk or run. Or maybe she will chose mobility in a different form. I don’t know & it doesn’t matter. Most importantly, I see a child that I pray grows up to realize each life is purposed by our creator, and nothing should be taken for granted.
I see a child that I pray one day stands before others to praise HIS name for the works completed in HER life.
I struggled with peace this week over our decision. What if we had pursued the study & been chosen for prenatal surgery? Would it have made a difference? The results did prove a decreased need for a shunt, and some improvement in mobility. But there is still no cure.
What if….what if….what if….
I came to the conclusion that it doesn’t matter. I made peace with our decision. God led our family tremendously during this time, and I refuse to doubt it again. Zoe is a rock-star and doing amazing.
I can’t be that person who lives life in the past. I have no regrets. There were no guarantees with either prenatal or postnatal surgery, and there still aren’t. The study was a great one that offers promise to tomorrow’s spina bifida babies as well as many other types of fetal surgeries. It truly is a medical breakthrough & made possible by amazing parents who were able to participate, many of whom have become some of my closest friends. I realized, though, I can’t live in the what-ifs of yesterday all the time. Because the honest truth is, our great God has created our child for today.
For such a time as this.