Our first night as new parents to a second baby was spent being woken up over and over to have Cooper’s heels poked to check his blood sugar. The reading kept coming back low, so they would take him to feed formula to help his levels stay up. I was also up all night using the hospital breast pump every couple hours. Breastfeeding did not go well with Andi, but I was determined to make it work with Cooper, so I was working hard to make sure I had the supply to keep him gaining weight. This was my only concern at this point in his life and my postpartum journey.
I was so ready to get home. Our puppy was there alone and disturbing the neighbors with all kinds of noise. Andi was at my sister’s nearby and I was just itching to get home and start settling into being a family of four. My insurance would cover a second night, but I told the nurses I wanted to be discharged as soon as possible.
Cooper was in the nursery being fed to keep his blood sugar up when the pediatrician doing rounds went through that morning. The nurses informed us that they would bring him back to our room as soon as the doctor was done with his exam. Our baby arrived as promised and we were making arrangements to pick up Andi later that day. My sister wanted to bring Andi by to meet her brother at the hospital but I told her it would be easier just to meet at the house.
James and I chatted happily even though we had both just spent the night in a hospital and were more exhausted than we’d been in years. We had started lightly packing up and making plans to go home that afternoon after I ordered some cafeteria lunch on the insurance’s dime. A nurse came in and said the doctor needed to check his blood sugar again before we left since he had been struggling with it. We were promised this second trip to the nursery would be quick, and we didn’t think anything of it.
After what seemed like forever, our baby came back and Dr. F came into the room along with Cooper. He’s a tall, slender man with dark hair, a soft voice, and an unassuming face. He isn’t our usual pediatrician. Andi had seen Dr. L almost exclusively since she was born, and so naturally he was chosen to be Cooper’s pediatrician as well. But the doctor’s office we use has many rotating doctors. So today, we got Dr. F. The conversation started out really casually, with pleasantries being exchanged and jokes about being tired. At least, I think that’s what was said. I don’t really remember what he said when he first came in because the only words forever burned into my mind are the ones that came next.
“So, Cooper is doing great, but we did find some physical markers for Down syndrome on him.”
My heart stopped beating and my breathing was suddenly shallow. The lights in the room seemed to dim and get brighter at the same time. My face got hot and tears started to bubble up. Did he just say Down syndrome? I couldn’t move my eyes. I couldn’t breathe. He continued talking but my mind was stuck on that sentence. Time had stopped momentarily. The world must have stopped turning. I felt physically sick, as if someone had gut punched me and was standing there laughing while I tried to catch my breath. My mind was racing so quickly I couldn’t pinpoint exactly what I was feeling. Was I embarrassed? Ashamed? It would not be appropriate to feel those things about any child with disabilities, let alone your own child. I can’t allow myself to feel that way. I managed to keep my emotions at bay and my face placid. Somehow, I brought myself back to Earth to focus on what the doctor was saying.
The doctor continued, “To be honest with you guys, I didn't even notice at first. But one of the night nurses pointed out a couple things to me and so we need to have him checked. First thing we will check right now is his heart. About half of kids with Down syndrome also have a heart defect, so if his echocardiogram comes back as abnormal, we will know pretty certainly that he does have Down syndrome. We should have those echo results by the end of day or first thing tomorrow morning.”
We had just been getting ready to go home today. Now, we had to stay and wait until we knew Cooper’s heart was fine.
Whoa, I thought, my baby’s heart might be bad. We had heard his heart beat so many times in the last eight months. It was always so strong and clear. Okay, what else do we need to do? My momma instincts were kicking in a little bit and I was ready to do whatever I needed to for our son and his possible heart problem. Maybe this is just a diagnosis we can outwork or outrun, like most other medical diagnoses.
“We will do a blood test called a karyotype and check his chromosomes. This is the only way to know for sure if he has Down syndrome. Those results aren’t as quick. They will take a few days to get back.” A heart problem they can probably fix. Extra chromosomes? There’s no way to change that.
Dr. F went on to describe the physical traits Cooper had that raised the red flag. His pinky fingers curve inward, and he has a large gap between his first and second toe. Ah, so those crooked fingers were something after all. He also had a single line, or Simian line, but only on one of his hands. His eyes were possibly a little slanted with an extra skin fold on the upper eyelid, and his neck maybe had an extra fold of skin. But, he’s a newborn baby, and all newborn babies look a little funky when they first enter the world. Next, the doctor said that Cooper was eating very well and had very good muscle tone. Typically babies with Down syndrome struggle to eat and their muscle tone is very low, making them what some people call “floppy” babies.
None of this information had ever entered my mind before. Never in my life had I looked up or heard anything about common physical characteristics of babies with Down syndrome.
“It’s really too close to say for certain whether he has it or not,” he said. “We have to wait for the karyotype to be sure.” We asked what few questions we had, none of which I can recall now. Neither James nor I had any experience with Down syndrome. The thought was overwhelming in a way that I had never experienced before.
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Because the doctor said there was a possibility Cooper did not have Down syndrome, we clung very tightly to that hope. Anytime someone came in the room and saw him, we told them the doctor’s suspicions and watched for their reaction. Did he look like he had Down syndrome and we just couldn’t see it? Every single person seemed surprised by the news and responded with, “Oh, really?” This fueled our hope even further. Maybe if they couldn’t see it either, it wasn’t really there.
All this time, the feeling I had about Cooper being different right after delivery and the lack of connection I felt with him was still in the back of my mind. Looking back, I can see how much I was trying to avoid the truth. Somewhere, deep down, I knew he had Down syndrome from the moment I met him, but I didn’t let those thoughts come out at that time. They crept out slowly. First, when James asked me if I thought Cooper looked like he had Down syndrome, second when I got the courage to ask nurse Marlee about his crooked pinkies, and finally, when Dr. F said they found physical markers for it. These words popped into my mind and would stay there indefinitely: Can you see beauty in things that are different? I believe it was a whispering from my Heavenly Father letting me know that our son did have Down syndrome and I had a lot of learning and growing to do.
That night, after a full day of riding the roller coaster ups and downs of “maybe our son has Down syndrome, maybe he doesn’t”, after spending hours online reading about the condition and the possibilities, after avoiding phone calls and texts from family and friends, the full weight of the news came crashing down. James sat on the edge of the stiff hospital bed and we both cried. I cried hysterically. The tears seemed never ending, probably because of all that dang water I had been drinking during delivery. My eyes became swollen and my throat raw from every wave of tears that would hit. I wiped tears and snot on an extra pillow case that had been sitting on the bed. I remember telling James, “I just wanted to give you a son. I wanted to give Andi a brother.” He nodded and, through tears, said, “I wanted that, too.” We talked about our concerns and feelings, number one concern being Cooper’s physical health and cognitive capabilities. He could have a defective heart. What does that mean for him? Would he be able to hunt with his dad? Play tag with his sister? And secondly concerned about how he would be received and treated throughout his life. Would he be made fun of? Will he have friends? Our lack of knowledge about Down syndrome made the situation terrifying.
We were truly terrified. And no one was encouraging. In fact, we felt the hospital staff was walking around on egg shells and avoiding the topic. We could have used a lot more support. The second morning when the NP doing rounds came in our room to talk to us about our son possibly having Down syndrome, her last words to us were, “Maybe we’ve got it wrong and we’ve just freaked you out for nothing.” As if to say there would be reason to start freaking out once the diagnosis was confirmed. There’s a lot more I could say on how the possible diagnosis was handled by the hospital staff and doctors, but suffice it to say that we were terrified and felt very alone.
One of my biggest regrets from this time are the thoughts that I let consume me. In my shocked, grief-stricken state, I had many terrible and defeating thoughts. Things that haunt me a little bit when I think about it too much. I have chosen not to share them publicly for various reasons. But, if you are someone going through a birth diagnosis, please reach out! I would be glad to discuss any and all thoughts and feelings.
It’s not easy to look back at that period of time. Our son was here! He was healthy from what had been discovered so far and he was doing well. But we were going through deep, soul-sucking grief. It was as if we had lost our son. This may sound terrible to somebody who has never received unexpected news about their baby. If I could go back now I would change the way I received that news and thank God for the boy we’d been given. I’d snuggle him and tell myself how lucky I am. But I can’t change the past, and I’ve found those emotions were necessary and, in a lot of ways, unavoidable. Yes, we had our son. But the fact remained that he was going to be a little different than we had imagined, and our lives would change because of that fact.
Oh, how I wish I knew then just how much I needed him and the change he would bring.
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