Our pregnancy journey began in December, 2013 after years of praying to hear the words: "Congratulations, you're pregnant." The feelings of excitement and joy of finally receiving the desire and prayer of our hearts to start our family can't be put into words.
The pregnancy started out with the normal exhaustion, occasional puking and hyper-emotions. Each time I ran to the toilet or ended a day completely dead on my feet, thankfulness was always on my lips. Each day was a treasure given to me after so many painful years of waiting, so all of the rough patches of pregnancy seemed like blessings.
By the time we got to our 20 week anatomy ultrasound I was feeling great; I had enough energy to workout consistently again, food started tasting good and the exhaustion was letting up. Not only did we make it to the halfway point, we were going to find out by the end of the week if we were having a boy or a girl. We were told that our baby was healthy and that he (our gender reveal dinner let us know we were having a BOY!) was measuring in the 88th percentile for size, which isn't a surprise since Tim is 6'4" and I'm 5'10". The ultrasound tech said she couldn't get a clear picture of something in the brain and even though she said it was nothing to worry about, she wanted to bring us back in 4 weeks for a follow-up. We didn't think anything of it because we've had friends who have gone through similar appointments.
We spent the next four weeks doing everything normal first time parents would do. We went shopping for boy clothes, started dreaming about the nursery and Tim started talking about all the things he was going to teach our son. We came back to get another ultrasound when I was 24 weeks, excited to see our little guy on the screen again. He rewarded us with wiggling around the entire time and even sucking his thumb at one point. We were joking and laughing with the tech until a point in the session where she became very serious and focused. Call it either early maternal instinct or years of self-protection, I immediately felt like something was very wrong. She told us she was sending the pictures of what she was looking at to the off-site radiologist and would be right back. I'm laying on the table with tears already streaming down my face while my always- faithful husband is telling me that everything is going to be fine, that buddy is just fine. The tech comes back into the room and tells us that we're going to be put in a room for the doc to speak with us. Those minutes of waiting were harder than the 7 years it took us to get pregnant, the longest of our lives.
When the doc came to speak to us, the look on her face said it all. She said that part of our son's brain hadn't developed and that he had a rare brain malformation called "Agenesis of the Corpus Callosum." The corpus callosum is a bundle of nerves that connects the left and the right hemispheres of the brain and allows them to communicate. Since this was her first instance of seeing this, she delivered the worst case scenario, that there would be a very good chance he would be severely disabled. I sat in stunned silence, heartbroken, not believing what I was hearing. It was like a bad dream I couldn't wake up from. Through tears and disbelief we left the doc's office and immediately called our church leadership for prayer and a couple of close friends that we wanted to pray for us. We could barely get the words out and at that point didn't want to really share this news with anyone. Our world, in a moment, had been turned upside down.
Thankfully, our doc scheduled a followup 3D ultrasound at Emmanuel hospital with the Maternal Fetal Medicine Clinic and an appt with a genetic counselor the next day. Neither one of us slept that night but I can't imagine what people who have had to wait for a week or two weeks went through. It was honestly the darkest, hardest night of our lives.
We had our 3D ultrasound and the neonatologist came to speak to us about the results. He confirmed that our son did in fact have complete agenesis of the corpous callosum (ACC) but that it was an isolated condition. He said that was good news because a lot of times with these babies they have other issues: facial deformities, cleft pallet, shortened limbs, heart defects, etc. But at this point our son showed no signs of other issues. He went on to say because this was such a rare disorder that no one could provide an accurate diagnosis of how this would affect our son's quality of life but that the majority of the cases that have an isolated ACC end up on the "mild" end of the spectrum. He also said because it's isolated that more than likely this wasn't a genetic condition but just something that happens sometimes when things don't knit together correctly. The bottom line is that he could have developmental delays (walking, talking, potty training) and issues with social development. He suggested an MRI on the baby once he's born to rule out any other malformations in the brain but other than that, there's nothing medically that could help us at this point.
Even though it was devastating to hear the confirmed diagnosis, we left the clinic with hope. That's really all we have left to us.
We are choosing to believe in our God and in the promises of His Word, that ALL things work together for good, that He knows the plans He has for us, not to harm us but to give us hope and a future and that He's knitting Samuel Alan (means "asked of God") together exactly as he should be. However, we are praying with everything we have in us for a miracle.
We are going back to Emmanuel today for a follow-up ultrasound and have been praying that God performs a miracle. We want to see that little part of his brain show up on the ultrasound and we are asking God to help it to grow. We understand that "scientifically" it's impossible for this to happen, but with God all things are possible. Even if it's not, we're praying that little Samuel will have a chance at a normal life-that he will walk, talk, learn, love, laugh-all the "small" and basic things parents want for their children.
Tim and I debated for a long time whether or not we should make this public. Our final decision was based on that we didn't want to hide this under a bushel. We want this struggle to count for something and for God ultimately to get the glory in how He's working in the situation. If there is any good or light that can come from this and bless others, we wanted to take the opportunity to share it. Also, this is about our son and getting as many people praying for him as possible. Nothing else matters.
Here are some things we're asking anyone reading this to keep in mind as to how to help us:
1) Please don't pity us. Pity is probably the worst kind of torture when it comes to these hard issues. Not only that but it minimizes God's sovereignty and strength in the situation, like God made a mistake. But His ways are perfect and He is good ALL the time.
2) One of the biggest concerns in sharing this with the world is that somehow people will treat our son differently or have a bias against him because of his condition. We are planning on (even if the outcome is more severe than we're expecting) to treat him like a normal kid. He will not use his "disability" as a crutch and we will make sure that he lives as normal of a life as possible-interacting with other kids, going to school, etc. He's not "disabled" until someone treats him like he is.
3) Most importantly, PLEASE PRAY. PRAY, PRAY, PRAY. We know our God is BIG and is the ultimate healer. We know that He still performs miracles that fly in the face of "science" and we want Him to show his power.
We'll keep you all updated.
Much love,
Shanna and Tim
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