After waking up, I remembered my bad news. Both my babies had high risk of entanglement and ultimately fetal demise, but I also had a baby with a serious brain complication.
The weight came crushing back down. It’s never a “day off” for a parent and it occurred to me that Rowan had an appointment with his pediatrician that day. I briefly wondered if my twins would ever see their 18 month checkup. After loading Rowan up, we drove the forty five minutes to his doctor, Dr. W.
How could I drag twins and a toddler to the doctor as often as I would need to for a child with serious disabilities? It seemed insurmountable. I was a 12 week pregnant mom worrying incessantly about the future and being a good parent to a child with special needs. It absolutely scared me. Gavin and I had already decided that we would do whatever it took to care for these kids.
Immediately, that included extensive sonograms each doctor visit, being admitted to either Wichita or Kansas City hospitals as a inpatient (never leaving the hospital) until the babies were born (8 week stay), c-section at 32 weeks, neurosurgery on my newborn, and extended NICU stay. My first son was the textbook definition of a normal pregnancy. This was a daunting year. Not to mention potential complications of neurosurgery on a premature baby. Long term? Who knew? Maybe regular appointments with a pediatric neurologist, maybe special bandaging for the baby’s head, maybe a special helmut to protect his skull and brain, maybe a device that drained excess cerebral fluid that was attached to his head, maybe a special school to help him learn at his own pace, maybe long term care, or even frequent hospital stays. I had no idea what to expect. There was no way for me to know.
I took my sweet little boy back to a clinic room and awaited the pediatrician. My oldest always excelled at these expectations. Rowan’s cognitive development was always just a tad advanced, his size was in the upper percentiles, his milestones were early and frequently occurring. It was hard to think that after such a normal healthy baby I would have two kids with so many more challenges facing them.
Dr. W. came into the room and smiled like usual, bringing a lady training to be a nurse practitioner. We chatted nonchalantly about Rowan and his chart. Everything looked good and healthy, no reason to worry. As they were readying to leave the room, I blurted out that I had a question. I apologetically informed him that we were expecting again and that they were Mono-mono twins. We talked about that for a bit and after feeling comfortable enough to ask more questions I told him about our other complication. When they heard encephalocele, their faces dropped a bit. Even if you don’t know what it is, sometimes medical professionals can disect the Latin origins of the word and figure it out. Dr. W asked if I was sure. I confirmed it with the ultrasound picture I left in my purse from the day before. I relayed the prognosis. Occipital lobe. Too small to see inside the cyst looking for brain matter. Possibility of occlusion. Small chances of survival. Almost total chance of some form of disability.
He and the nurse practitioner listened intently. I saw sympathy and understanding in their faces. I cried. I tried not to but I wasn’t superwoman. I was emotional. Dr. W assured me that things are not always what they seem. He explained that doctors tend to prepare you for the worst and hopefully you don’t have to deal with that. The nurse practitioner shared with me her son’s story.
A heartwarming story about how her placenta pulled away and her water broke. Blood everywhere. The ER told her to go home because the baby had died. She came back in the next day because her OB wanted to check her. Baby boy was alive and healthy. He was delivered immediately and started to do well. Shortly after they told her he had a serious condition (I can’t recall what it was) and to prepare for his death. She made funeral plans and tried to accept the fact that her baby wouldn’t live past 9 months. The nurse practitioner’s mother came over every opportunity she had and prayed over that baby. She rocked and loved him and prayed with all her heart. Didn’t matter that the nurse practitioner didn’t believe in God or accept Jesus as her Savior, grandma still prayed for that baby. He is now 17 years old and graduating high school this year with no health issues. She showed me a picture of a beautiful young man going to prom with his date. I looked up and her and she told me she accepted Christ shortly after. He had saved her baby boy and she would never doubt that.
I felt slapped. I smiled and told her what a blessing it was to hear that but inside I was shocked. This woman had NO faith and she still trusted God with her life and her son’s life and became a Christian.
I was ALREADY a self proclaimed Christian. I should have had that kind of faith. I should have built her up instead of her building me up.
Dr. W smiled kindly and said his advice would be to wait till birth. He said to do whatever I could to get those babies to their goal gestation and wait till they were born. He said whatever your baby needs after his surgery he would facilitate that so I could continue going to a local pediatrician instead of 2 hours away. He hadn’t dealt specifically with an encephalocele but he had dealt with similar afflictions and assured me that they would do whatever we needed.
Then he shocked me. He asked to pray with me over my children. Tears filled my eyes again and I simply nodded.
We prayed and he asked me if he could put me on his church’s prayer list. I wiped my eyes and told him absolutely. He gave me a hug and so did the nurse practitioner. I watched them leave and collected myself. I hugged my son tightly and promised him a small milkshake for being so good for the doctor.
I got home and considered the updates on our situation. Dr W. was right. Who was I to worry about the future that hadn’t happened yet. If our baby was meant to survive, then he would. I firmly rejected every thought of abortion from there on out.