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As I sit here holding my son who just turned one week old, I realize how different our setting is than what it should be. Our home together is a small room in the Winnie Palmer Hospital in Orlando. We are in a level three pod in the NICU, the most intensive care. It’s fairly quiet except for the inane chatter of the day shift nurses and the slight rasp of Christian’s breathing aided by the ventilator.
Christian wasn’t premature, nor is there anything wrong with his lungs. He has a heart defect, and worst of all, he has Walker-Warburg syndrome, which affects his brain. How did we get here? Well this is Christian’s story, and I am but the narrator as he and God write plot.
The Beginning of Our Story
I found out I was pregnant Friday, March 23rd after a week of fatigue and taking naps I didn’t want to take. The tests I had taken two weeks prior had been negative, but I was getting suspicious anyway. I finally worked up the nerve to take one. When I saw the positive I was overjoyed. And stunned. What I had wanted for most of my life was finally happening. I could not wait for all that was to come.
When the hubs and I went in for our first ultrasound at the end of April we were so excited. We got three of the most adorable pictures of our little peanut and we excitedly shared them with our family. The OB nurse talked about routine things with the pregnancy going forward and then she went to get the doctor who wanted to talk to us.
We had a conversation I never imagined. He said that in the NTS (nuchal translucency screening) there appeared to be extra fluid at the back of Christian’s neck. That meant extra blood work and frequent, more sensitive ultrasounds. We were worried but felt confident that everything would be ok.
Hoping for the Best
In June we went for another follow up ultrasound and the doctor thought that severe abnormal markers warranted an amniocentesis. It was extremely painful physically, but more so emotionally. Our doctor plainly expected Christian to have a lethal genetic abnormality which may take his life even prior to birth. He did not give us any hope, in fact, he may me feel like everything was lost.
For days, I hugged my belly, talked to him, cried, and walked around in a haze. When the results came back, everything was normal. No genetic markers in that test could explain the heart defect the doctor saw, or the fluid on the brain.
We were referred to Nemours Children’s Hospital fetal medicine division where we met with specialists throughout the end of July to mid-October. We had several fetal echocardiograms and a fetal MRI. Read more about the MRI here. There were consults with a cardiologist, neurosurgeon, neurologist, genetic counselor, and a new maternal fetal medicine specialist.
They all had one thing in common. No one could tell us anything with certainty. They knew there would be problems and he would have delays, etc. But no one could tell us what was wrong or what to expect. The hubs and I had a lot of ups and downs emotionally as we processed and dealt with all the critical medical information over the months. But we kept coming back to a gut feeling that he would be ok. Yes, he would have issues neurologically, delays, and the need for surgery. But we felt like it just wasn’t the tragic end to Christian’s story that all the experts were portraying.
With so much concern for Christian’s health at birth, it was decided to deliver at Winnie Palmer hospital via cesarean section at 38 weeks. There we would have access to one of the top NICUs and other specialists for whatever ever Christian’s challenges were after birth. Before dawn on the warm morning of November 6th, the hubs and I drove to the hospital. I had been nervous for a few days, mostly about the surgery as I had never even had stitches before. I couldn’t even begin to fathom what would happen for Christian after birth and chose to focus instead on my own fears about surgery.
Christian’s Birth Story
It was a simple c-section. No complications or issues for me. He was born at 7:51 am. I heard him cry and saw him through the clear drape. It was incredible and I cried with fierce joy at seeing my son. My son. It was absolutely indescribable.
Instead of putting him on my chest for immediate skin to skin contact, Christian was taken to the left of me to be worked on by the neonatology team. While I was cleaned up and put back together on the operating table, he was worked on as well. Neither I nor the hubs could see what was happening and it felt like a year before we heard anything.
The neonatal doctor eventually came over and apologized for the delay. She told us she’d had trouble putting in Christian’s breathing tube, that his anatomy didn’t seem right. I blanched. What else could be wrong with my son?? It turns out he has a deviated trachea which is why they had so much trouble, but eventually they got the tube in.
Once he was stable with the tube, they began to do all the normal things that they do with newborns; footprints, weight (6lbs 12 oz), length (20 inches), and letting daddy take pictures. The whole time I was still on the operating table and could barely see what was happening. When they finally finished, a nurse brought over a little bundle for me to kiss and hold. It was so hard to let go but he became more and more blue as the minutes passed. So I let them take him to the NICU while I was taken to recovery.
A Visit to the NICU
After a few hours in recovery, I was able to go to my room but they took me by his bedside on the way up. I couldn’t touch him, but I could see his perfect little body laying in the warmer bed with probes attached all over. He also had a breathing and feeding tube down his throat. It was both pleasure and pain to see. I didn’t get to see him again until after 10 am the next morning. I spent almost twenty four hours without my newborn son.
We were unable to do much other than hold his hands and touch his perfectly soft skin. His NICU room was loud and noisy, housing three other infants who all needed intensive care. It was hard to get down to see him often because we were so far apart. Additionally I was dealing with recovery issues of my own from the c section. That afternoon Christian had an MRI to give us a more complete understanding of what was happening with our little man.
A Life-Altering Meeting
Just two days following his birth is a day I will never forget, though I desperately wish I could wipe it from my memory. The hubs and I came down early from my room and heard a good report from the nurses. Christian was doing well and we were feeling really good and hopeful.
We were pulled from his bedside for a meeting. We were anxious for results of the MRI done the day before. The unexpected tone in the room was somber as they told us that the MRI imaging presented the worst case scenario. Christian’s brain stem was kinked and the brain showed lissencephaly (a smooth brain with a lack of grooves and valleys that are necessary for normal functioning). Their prognosis was dire, with the feeling we had days, maybe weeks with our precious little man. They offered us no hope and no answers.
Despair for Christian
We sat alone in this small dark conference room holding each other, angry, despairing, crying, and devastated. This was our nightmare. All of what we had been told came to pass. How could we face the next minutes, hours, and days knowing that our little man may barely have a life? A life that we so desperately wanted for him? How could we even begin to cope when we were already so in love?
We took time to regroup, nap, and continue to hold each other close through the afternoon. When we returned to his bedside, he had been moved as promised, to a different room with only one other baby in attendance. There was more room for us to be a family.
He continued to do well and the next day I was able to snuggle him on my chest for skin-to-skin time. I cried. It was such a simple moment that most mom’s probably take for granted. But for me it was a miracle. He loved it. Being held is truly Christian’s favorite thing. He falls into a nice deep sleep whenever his daddy or I hold him on our chests.
Where Does Our Story Go Now?
So here I am. A mom wondering how she’ll be a mom if and when the unthinkable happens. I know I did my best for my son and we went to such extreme lengths to understand and give him the best care. There were over thirty doctor appointments and consults in just over four months. Often I was at a doctor’s office once a week, learning as much as I could. But it may not be enough.
My sweet son who everyone falls in love with, even the nurses, may only be with us for weeks, maybe months. This little boy who has most expressive little face and fists is writing his own story. We can only sit back and watch as he and his body tell us what he wants next. Our hearts are breaking but we know that like us, Christian is a fighter and we are in awe of his fierce spirit.