It was October when we found out we would be parents again. We hoped for another boy to be best friends with our oldest.
Months passed and my pregnancy was smooth. In February, we went for an ultrasound. The technician said that she was having trouble viewing the baby (boy!)'s heart and could we make an appointment for a level two ultrasound?
We were thrilled to get our wish of a boy, who we would name Charles, after my dear grandfather. The alarm bells did not go off at all. At the level two appointment, I had no fear until the technician left the room and came back in with my OB. "Just trying to see his heart!", they chuckled uncomfortably. He suggested that we talk in his office after I wiped the goo from my stomach.
Here is where the alarm bells started going off.
We sat across the desk from my normally jovial OB and heard the words "heart problems" and "closely associated with Down syndrome" for the first time. He looked a bit grim and was apologetic almost to the point of tears. I was trying to wrap my brain around what Down syndrome had to do with my baby's heart. Of course, I would learn that Down syndrome and heart issues were very closely linked, but until that moment I had lived in a bubble of blissful ignorance.
He suggested, gently, that I have a pediatric cardiologist look at the ultrasound and that I have an amniocentesis to check for Down syndrome. I agreed to both these suggestions and at some point, we walked out of the office, shocked and stunned and numb.
We had to wait a few days for both appointments and there would be further waiting to get the results of the amnio.
Waiting really sucks.
Talking to the pediatric cardiologist was surreal. She explained the diagnosis: Complete Atrioventricular Canal Defect. It sounded scary. Here is the definition taken from the American Heart Association website:
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
This was no run-of-the-mill hole that would close on it's own. My baby had a big hole where he should have valves and chambers. I was aware of the doctor talking about repair and heart failure and how big my boy would have to be before they could open up his chest, but all I could think about was how sorry I was that he would have to endure all that. This poor little guy, not even out of the oven yet, was looking at open heart surgery before he turned one.
"But, but ( I kept saying) he is growing so well!" and he was. I could not imagine how he could be so ill when he seemed to be thriving in my belly. The truth was, his heart didn't have to do much in the womb. I was doing most of the work at this point. I was happy to keep him safe for the time being and terrified of what would happen when he was born.
In March, we found out our second son had Down syndrome.
We had expected this to be the case, since learning that Charles' particular defect was so common in children with Down syndrome, but it was another blow to us. So much "bad" news about a kid who would, over the next 15 years, enrich our lives beyond measure. But we didn't know that, yet. This was a time before Facebook or Google. Finding information about Charles' issues was daunting and mostly, really scary. Hardly any of the information I found was comforting.
The weekend after the Down syndrome diagnosis, we went out to breakfast. We were scared and sad and looking to distract our two year old. When we sat down, we saw a family in a booth nearby. Like us, they were a mom and dad and son. Their son looked to be about fifteen and he had Down syndrome. I marveled at how totally normal they looked; how happy. I looked at my husband at that moment, saw that he was seeing the same thing and we both instantly knew it would be fine. We would get through and someday, we would be the family for someone else to look at and say "Huh. They look so normal".
If anyone wonders why I push/scream/beg for inclusion at every level, this is why, but that is a blog post (or three) for another day.
Charles let us know of his imminent arrival in the wee hours of June 6th, in the middle of a fierce thunderstorm. He wasn't due for another three weeks, but Charles has never had much use for schedules except his own.
When he arrived at 10:10 am, he weighed seven pounds, ten ounces and was, on the surface, a chunky, healthy, beautiful little guy. I had never been more happy to meet another human being in my life. After all the negative we had heard about him, finally, FINALLY, here he was and I could see that he was our gorgeous baby, nothing more or less.
Over the next almost six months, our main jobs were to keep Charles as healthy as possible and to get him to gain weight. He was not what you would call a champion eater, so I was pumping breast milk night and day for him. He was diagnosed with failure to thrive and we began supplementing his breast milk bottles with a heavy formula administered through an N.G. tube overnight.
By the time he was four months old, we were giving him medicine to offset the affects of heart failure. I've learned that heart failure sounds scarier than it is, but it's still nothing you want associated with your kid. At this point, he had bulked up sufficiently that they decided to schedule his surgery. He would be admitted to Children's Memorial Hospital in Chicago on December 5th, 1999, one day before his six month birthday.
As I said before, waiting sucks.
I passed the time marveling at his smiles and laughs and his long, Kewpie doll hair. I found myself looking at his sweet, smooth baby chest, knowing that he would soon have a long scar, marring it forever. I put my hand over his broken little heart and willed everything to work out well.
As we exited the tollway on the way to the hospital in the dark of the early, winter morning, the song "You'll Be in my Heart" (listen to it here) came on the radio. I literally can't type those words or hear the opening notes of the song without crying.
Our boy was so little that the anesthesiologist carried him in his arms back to the operating room. The fact that he was smiling, that he had no idea what was about to come made it almost worse for me.
Then, the waiting. So much sucky waiting.
We were warned that our baby would be unconscious and that he would look bloated. He was and he did and it was a little hard to take, but he was alive and by all accounts doing very, very well.
Charles went from a sleepy, poorly eating baby to a chunky, healthy baby within weeks of his first surgery. He was home within a week. The change was nothing short of miraculous as far as I was concerned, but typical to the doctors and nurses whose job it is to fix these kids.
The second surgery was in some ways harder than the first, because at six, Charles was well aware of needles and hospitals and pain, but he was braver than the rest of us. He handed over his Gameboy, let us hug and kiss him and wheeled away from us.
Hours and hours of terrible waiting; but again, he came through brilliantly and recovered so quickly that we had to slow him down for fear that he would open up his surgical scar or injure his healing breast bone. Keeping a six year old boy still is no easy task. Less than three weeks after his surgery, he was climbing up the school bus steps on his way to Kindergarten. I shed many happy tears that day.
Charles is now fourteen and he has a routine visit to the cardiologist just once a year. His repairs were so well done, that even his cardiologist has trouble hearing any murmur (due to a slightly, chronically leaky valve) anymore. He takes no heart medication at all and has no restrictions because of his condition. The only physical reminder of his surgeries is the scar from his clavicle to above his navel. He talks about it now like it's a war wound. He's kind of proud of it. He's definitely earned that right.