I got a call on my way to the first Scottsdale Bible MOPS meeting on Sep. 4. I was scheduled to be a greeter in the parking lot and had my cute new t-shirt on. The call was from my midwife office saying that the results of my genetic testing were in and I needed to come in right away for the results. I asked if they could be given to me over the phone and she replied, “No.” My next words were something I thought I was saying in my head but they came out loud, “So the results are bad.” She was silent.
I dropped Weston at the nursery and tried to pull back tears as I greeted all the new moms that morning. I told two friends about my call and made it through that meeting. When it was time for sharing at our tables, we were supposed to talk about something we needed courage for. I couldn’t bring myself to bring it up yet because I didn’t want to believe it could be true. I knew my chances were a little higher for a Spina Bifida child, but the genetic test checks for several disorders and I had no idea what it could be. Keeping calm was the only thing I could do. I also kept reminding myself that these tests are usually false positives and everything is fine.
Bryce took the afternoon off work and we went to the doctor’s office together. I heard one midwife say to another in the hallway, “I’d like to come watch you give this news.” Both women came in and said, “I’m sure you already know that your screening came back positive for Spina Bifida.” I didn’t know this for sure yet, but now I did. She explained that these are almost always false positives but the level 2 ultrasound would show more. I asked if there is a specific number correlated to these results and she said no there isn’t; it simply says “positive.” I requested a copy of these results.
As we lay in bed that night, I began looking through the results and there were numbers linked to the data. I don’t think the midwives work with these scenarios often. It only took a quick google search to see that my AFP levels, which is the SB indicator, was extremely high. Far too high to be a false positive. My heart sank but Bryce told me to stop researching.
The next morning I held my phone in my hand and called the Perinatal office the second it was 8 am. We were scheduled to have a week long trip to Chicago to see friends (without Weston) only a few days later, and I knew I could not go on this trip without knowing for sure. I begged them to squeeze me in that day, and after over a dozen calls back and forth, we were scheduled for a level 2 ultrasound at 1:30 pm. Again, Bryce took time off work and met me at the office. I had nerves about what was to come, but I still felt so positive. I had just canceled our upcoming gender reveal party because I knew we would find out the baby’s gender in that moment. Even if the news was good about the SB, I wasn’t up for hosting a party.
The ultrasound tech looked at the baby’s spine right away and said, “Rest easy dad. You look so nervous. The spine looks perfect. You can take a breath now.” I have never felt such relief and gratitude to God in my life. We spent the next hour getting to watch our baby wave at us, dance around and learn we were having another boy. We had already decided we would name him Miles Gabriel. As she scanned over each body part, I said to her, “That’s the most perfect spine I’ve ever seen. That’s the most perfect brain I’ve ever seen.” We laughed and joked and I’m so happy I had the special hour with my son. I would never trade that hour. I got to meet him, knowing he is perfect and getting acquainted with him just as he is- my son, not a disabled person.
The tech left us alone in the room for about 15 minutes as we sent texts to family, overjoyed to be having a second boy! It was a really happy moment. I was getting hungry and wanted to get out of there to get lunch. Then the doctor came back in the room and asked me to get back on the table. I thought nothing of it. She probably just needed to double check everything. She looked for about 5 minutes, asking me many questions about my sister’s Spina Bifida. Where is her lesion? How disabled is she? Shortly after those question she said it, “There is a Spina Bifida.” I just stared at her. I must have heard wrong. She saw my face and repeated, “Yes there is.”
It felt like a wave of heat started in my head and washed down my body. My throat closed up. I can still feel the physical reaction. Bryce grabbed my hand. Thank goodness for shock because over the next ten minutes she showed us the opening on the baby’s back and the malformation in his brain. She said the ultrasound tech had missed it but she was able to see it in his brain and some indenting on his forehead. I was able to calmly ask questions. One of my first, does he have SB Occulta, the mild version? No, he doesn’t. I already know so much about SB that I didn’t have to ask many questions. Bryce was silent. She sat me up on the table and talked about the many options we have moving forward. She said we can discuss those options. I think I just stared blankly at her. Finally she said it.
“Do you want to continue with the pregnancy?” You know when this is offered you are dealing with something serious.
“Yes,” I said very sure. I didn’t even need to turn and look at Bryce. I knew his answer. She said that is great news and now we know which direction to go from here. Next we met with a genetic counselor with a thick French accent and I could barely understand her. She asked a million questions about our family and medical history. She said this happened because of a combination of environmental and genetic factors, and before I would have known I was pregnant. I asked if my Diabetes played a role and she said, no. My blood sugar control is so good that my chances would be no different than anyone else. After this, she explained Miles also has cysts on his brain that could be benign or could be a sign of a serious chromosomal defect called Trisomy 18 and he probably wouldn’t live long if he has this. The doctor had not mentioned this. I could get this test, that test, more tests. I don’t remember what all of them were. The doctor came back in the room and said I may qualify for the inutero surgery that is done before the baby is born. We said we were interested in this. She then said it is unlikely they would accept me because of my Diabetes.
Oh, there it is. Diabetes coming to harass me again. I’ve never hated Diabetes so much. I never wanted it to affect my children.
We needed to meet with a pediatric neurosurgeon, urologist, orthopedist, physical therapist, occupational therapist, blah, bah, blah. The baby won’t have bowel or bladder control his whole life. He may not walk. His spinal cord is tethered in the womb. He had enlarged ventricles in his brain indicating hydrocephalus. I already knew what these things meant but hearing it explained for your baby makes the words sound different. I grew up witnessing what this life is like through my sister, but I was never her caregiver. It all sounded scarier now.
Finally, the counselor and doctor could see we needed to digest this. She said we had just been given a lot of really hard information and we need to go home and process it. I would be hearing from Phoenix Children’s Hospital to set up some consultations. I used to care about what all of this would cost, but everything seemed trivial now.
Bryce and I had driven separate cars and agreed to meet at his mom’s house to pick up Weston. We didn’t say much in the parking lot, just hugged. I called my mom and told her. It was her worst fear come true. I was still calm. No crying. She stayed calm too and took a deep breath and said, “Ok. Well we will deal with this. I’m so happy you believe in life. He will be a great kid.” We were both in shock at that point. Bryce and I explained what we could to his mom. She teared up. We told her we would be canceling our Chicago trip.
On the way home I was in a daze. I stopped to get gas and accidentally locked Weston, my phone and my keys in the car…in the Arizona heat. A truck driver let me use his phone and the police and fire department came and broke into my car. As the police officer questioned me, I thought for a moment they might take Weston away from me. It was not a good day.
We walked into our quiet house and it looked grim and sad. Bryce and I sat on the couch, crying and holding each other. We held Weston. We just cried. It was the darkest moment of my life. We went for a nightly walk like we normally do and said all our fears. I’ll never forget what Bryce said. “All I ever wanted was a normal life.” We both knew nothing would be ordinary anymore. People like to remind us that normal is relative and boring but in a moment like that, normal sounds really really nice. Would we travel? Would anyone watch our kids when there are extra needs involved? What will happen to our marriage? To Weston’s life? Will we go bankrupt with medical bills? We already can’t afford my Diabetes costs. Will Bryce’s career goals be halted? Will we have more children?
I didn’t sleep that night. Not one moment. Anyone who knows me knows that I like to sleep and I can do it pretty much anytime. I finally got up and researched Spina Bifida. I wanted to find a magic blog or article that told me everything would be ok. I didn’t find that. I wanted to pinch myself and wake up from the nightmare. I was awake. I wanted to turn back time to 4 months before and change whatever I had done the day my son’s neural tube formed. Did I take a hot bath? Was it the week I had the stomach flu? Did I forget a prenatal vitamin? Did I eat too much dessert? I’m supposed to create a safe environment for my baby to form and I failed. I knew that these things aren’t truly my fault but depression does an interesting thing to your mind. It makes it wander into unsafe places that only God can pull you out of. My thoughts were admittedly dark that night.