Let’s Start at the Beginning
If you’re reading this post, it’s very likely this is the first you’re hearing about Stellan’s condition and I’m sorry if you’re among the many people learning this here and not directly from our mouths. The fact is, this has been an incredibly difficult few months and, while we wanted to tell as many of our friends and family in person (or at least by phone) as possible, it turns out that it’s not the easiest thing to do. So many of you are geographically distant, and to be honest, sharing sad news over and over takes its toll.
So forgive us if this is news to you. You’re not the only one.
About this blog. Well, this isn’t my first blog, though my other one was created and maintained under very different circumstances if not for different reasons. Quentin and I wanted a way for us to share Stellan’s story and his updates with our friends and family, but we also wanted to be a resource for other parents and families in similar situations. Being parents is still a new concept to us. Being parents of a special needs child is completely foreign.
And how about that special needs child. Let’s start at the beginning.
Stellan was born at 7:21am on February 22, 2012. 2-22-12: a date we thought was pretty cool and must somehow be a lucky one. He was born seemingly healthy, if slightly overcooked at 41 1/2 weeks. My pregnancy was as easy and uneventful as anyone could hope for, and the only thing unusual about my labor and delivery was the sheer speed and intensity of it. From start to finish, it took all of five hours – something I understand is pretty unheard of for a first child – and I managed to get through it all without an epidural. Frankly, I’m not sure there would have been time to administer one.
We took Stellan home after a two night hospital stay and the only issue of note was how much difficulty Stellan had “latching on” and feeding. In hindsight, it could be considered a bit of a sign, but at the time, I just kept reminding myself what everyone told me: breastfeeding is difficult, for both mom and baby. I worked hard to keep us both at it, and reminded myself to be patient.
Our first couple months at home were also relatively uneventful and Stellan slept remarkably well. He went to restaurants and museums, had loads of visitors, and took his first flight at 6 weeks – across the country from New York to San Diego, my hometown. Three weeks later he took his first international flight to Paris, where Quentin grew up. He was, and continues to be, a great little traveler – incredibly calm and peaceful on the plane, always admired by flight staff and fellow passengers for his good looks (and I’m not just saying that because I’m his mother!) and his easygoing disposition. By the end of 2012, Stellan has made two trips to California and three to France – and he usually gets upgraded, lucky guy.
At Stellan’s four month check up, Quentin and I expressed our concern over the fact that Stellan was falling below the growth chart for weight. He was still growing – a good sign – but his weight gain had slowed pretty dramatically and his head size was also small. The pediatrician also noted that his head control wasn’t where it should be, meaning that he wasn’t keeping it up and steady as most kids start to do by that age. But all kids develop differently, so we added a 5 month visit (a “growth check”) to monitor his weight and his head lag. We started feeding him solid foods around this time, which is pretty early, in an effort to put some weight on him, and we also increased the amount of formula feeds he was getting – for the first four months of his life, Stellan had been almost exclusively breast fed.
At the five month visit, Stellan’s weight hadn’t improved much, and his head control hadn’t either. He wasn’t rolling over, reaching for things, or really doing much of anything at all aside from being incredibly cute and cuddly. He could keep his head up when up on our shoulder, but he detested “tummy time” and protested by screaming and doing a baby faceplant. His pediatrician again suggested that we give him a little more time and wait until the 6 month visit before seeking out specialists, and Quentin and I agreed.
But two weeks later I had to take a short business trip to Brazil and had plenty of time to think during two 10-hour flights on my own. The night I got back I spent wide awake, thinking that if we waited for the 6 month visit and found out we needed to see a specialist, that we’d then probably have to wait another several weeks for that appointment, and several more weeks if we were sent to someone else, and that we might not know what was going on until Stellan was 9 months old. I knew I’d never forgive myself if I found out later that we could have been doing something. So I called the pediatrician the next morning, took Stellan to see her a few days later, and by the following Monday morning, we were at a neurodevelopmental specialist’s office, where we heard one of the worst things you can ever hear.
There’s something wrong with your baby’s brain.
This is never the kind of thing you want to hear, but getting the news first thing on a Monday morning before work was even harder. She told us to get an appointment with a Dr. Wolf, a neurologist, and to try to get a brain MRI as soon as possible.
Quentin and I, and Stellan’s nanny Molly, were all devastated. And worse, when I tried to get an appointment with Dr Wolf, I was told his first availability would be Sept 30, six weeks away. It was Monday morning, August 13th. We had spent the weekend in Pennsylvania visiting my grandparents, along with my parents, who cancelled their flights home to California and drove to New York to be with us. Somehow my dad worked some magic on the way and got us in to see Dr Wolf two days later, on August 15, which happened to be the day before our wedding anniversary.
The two days leading up to that appointment were awful as we dealt with the anticipation and unknown, but nothing like the weeks that followed, and I kept thinking to myself how hopefully we’d laugh about this one day when we thought back on how worried we all were. Dr. Wolf had a few thoughts about what we might be dealing with (none of which were as grave as the ultimate reality) and suggested we do a 1-hour EEG to rule out seizures. Getting an EEG in New York City would’ve taken weeks, but we were able to get one that same day at Dr. Wolf’s other office in Westchester, a drive of about an hour and a half.
Fortunately, the EEG showed no signs of seizure activity – a major relief, though we had only tracked it for an hour – and the next step was a brain MRI. Again, trying to get an MRI in NYC would’ve taken us into October so we opted to go up to Northern Westchester Hospital, where we could have one done the following week on August 22, Stellan’s six month birthday. We drove up Tuesday night and had to keep Stellan awake as much as possible that night, in addition to waking him up by 5am the morning of the MRI. He was scheduled to be sedated at 7:30am, and keeping him awake until then was no easy feat. Obviously keeping a baby awake most of the night means keeping the parents awake most of the night, so everyone was tired the next morning.
But the MRI went smoothly and we were back home in Brooklyn in the early afternoon. We spent our last few days in ignorant bliss before a small bomb was dropped on us Saturday morning. Dr Wolf called to say that Stellan appeared to have a brain malformation called Pachygyria, but that he hadn’t yet fully reviewed the scans himself and also wanted to send them to a radiologist at Cornell for a second opinion. He told us not to start googling things and said we’d see his partner in his office on Monday.
That Monday turned out to be the worst day of our lives. We were told that Stellan’s brain didn’t develop properly in utero, that we might not ever know the cause, that there is no cure for his condition, and that we would not know his prognosis until much later. While I was a mess of tears, Quentin calmly asked what the range of the outcome might be. Dr Wolf’s partner told us, “Best case, he could be almost normal, maybe with a slight limp or a slight learning disability. Worst case, he’ll never walk or talk and could have severe mental retardation.”
And that marked the start of our new reality, of our new lives as “special needs parents.”