At 37 weeks I delivered a five-pound, nine ounce baby boy. We named him Nathan, which means “gift from God.”
It quickly became apparent to us that something was wrong. His cry was weak. He had a strange spot on the back of his head and he seemed to be constantly choking on amniotic fluid. He didn’t nurse right away, which didn’t overly concern me. But my husband who has a medical background kept asking me, “Does his cry sound like a cat to you?” I kept saying, “I don’t know honey, I’ve never owned a cat!” We both knew something was wrong intuitively and my parents later said they could read it all over my husband’s face in the recovery room.
That night I looked over to his crib and realized he had turned blue. My husband simultaneously suctioned him and pulled the call button. Something obviously wasn’t right. He couldn’t manage his secretions without choking and he couldn’t keep his temperature up. So up he went to the NICU.
And there went my plan for the perfect photograph of me with my whole family in my hospital bed. I was all alone in the hospital room waiting for news of my baby. When the neonatologist finally came downstairs to report how he was doing he said, “I don’t think he has trisomy 18 (which is a rare condition where the baby typically dies in its first year of life) but the x-ray shows his heart is on the wrong side of his chest. We are going to keep him upstairs to do more testing.” When he left I promptly asked for more pain killers went straight to sleep in light of some terrible and uncertain news.
The syndrome that we suspected meant that Nathan would be severely developmentally delayed. We waited for two weeks in what felt like purgatory to receive word on his blood work. This was supposed to be one of the happiest, picture perfect moments of my life. Instead I fought desperately to not completely give into despair. Scripture was my only defense. I prayed through the Psalms almost constantly. The moments when I remember having peace were when I had that baby in my arms. For two weeks I lived in the extremes of denial that “he’s okay, he’s a typical baby” to complete depression that “he’s not going to make it.”
Finally we had results and met with a geneticist. Her first words were, “Congratulations Dad. Your diagnosis was correct. Your son has Cri du chat syndrome.” Cri du chat is french for “cry of the cat” which is why my husband kept asking me about his cry. It hardly felt like congratulations to me, especially because after that she said, “He’ll likely never walk or talk. You will be living with an adult child unless you decide to put him in a group home.”
This was hands down the worst day of my life. No one, when you’re a little girl, dreams of growing up and having a child who will be in a wheelchair, or so cognitively impaired that he won’t be able to function independently, or that his behaviors will cause people to stare and feel sorry for him. I’m sure you can believe that this is nothing that I dreamt up when I was a kid. This was not my plan nor the perfect family I was envisioning.
I clearly remember the night after that diagnosis. We left the hospital to grab dinner and get some fresh air. As I tried to force down my food, we watched several dads kicking around a soccer ball with their kids. I doubted this would ever be the picture of our family with Nathan participating. It struck me this was a game changer for my oldest son too. We wanted to give him a sibling but I felt like I had completely failed him.
A few days went by after we got the diagnosis and I started to rally. In some ways knowing what we were up against made me feel like I could somehow jump in, take charge, and figure this child out. Sure he was going to have some disabilities but I was starting to muster up the raw strength and courage to make the most of it and somehow make a plan and carry on with our lives. Because that’s what I do.
God quickly showed me that I couldn’t do this on raw courage alone. Shortly after we started to get our bearings, Nathan completely stopped breathing for several minutes. I learned this from my husband who had gone down to the hospital late one night. Around 11 o’clock I got a call from him. “He’s not good, Kathy. The whole respiratory team came rushing to his bedside. They ran code on him and it took about thirty minutes for him to regain color. He’s not good.” he repeated. I tried to mumble something encouraging, told him thank you for calling, hung up the phone, and promptly rolled over and went back to sleep. That was the second time when I was hit with very bad news and my response was to roll over and go to sleep. My body was being pushed to the max as were my emotions and my faith.
The next day Nathan was transferred to Dell Children’s Medical Center. That wasn’t the last time he had to be resuscitated. It happened two other times. As the medical staff were rushing around my baby and pushing me out-of-the-way, I sensed God asking me, encouraging me to surrender control of my child’s life over to Him. In that particular moment, me surrendering was a matter of accepting his life or death.
Nathan eventually made his way outside of the walls of the hospital and home into our arms. Now that he’s home, surrender has become a way of life in everyday things. Daily I must advocate for therapies and medical interventions, while simultaneously surrendering my desire to control the outcomes of my child’s development.
We are still uncovering mysteries of Nathan and how God made his fragile little body. There are all sorts medical abnormalities about him that puzzle even the experts. His heart is not in the correct position in his chest and he has an enlarged ascending aorta. He has high-grade kidney reflux which is damaging his kidneys, his right kidney is the size of a 25 week fetus and has stopped growing entirely. The strange spot on the back of his head looks like his brain is growing out through the back of his skull on the MRI. He needed surgery for a tethered spinal cord. But of all these, eating was, and still is the hardest issue for me. He simply cannot manage the timing of coordinating when to swallow and therefore he aspirates when he tries to eat my mouth. We reluctantly decided to put in a G-tube at six weeks old which is a way for him to receive nutrition directly to his stomach. No one can give me an answer as to whether or not he will ever eat my mouth.
And that’s the hardest part. The unknowns. Because I don’t get to make up my own plan for Nathan. And I don’t get to know God’s plan either. Instead I’m learning to depend on a loving God providing everything that I need day-by-day.
He has shown up in some pretty amazing ways. I am also falling more and more in love with who Nathan is every day. This blog is where I tell those beautiful stories–stories of finding beauty and hope in a special needs diagnosis.