I knew it was going to be bad as soon as I opened that door.
I didn’t know how bad, necessarily. But I started bracing myself for the worst almost immediately.
I was with my wife, Caitlin, and we had just been summoned into an extremely depressing boardroom at MassGeneral Hospital for Children. There were two doctors, a nurse, and a doctor’s assistant sitting at a large circular table.
None of them were smiling.
This was just after New Years in 2014, and our second son, Brooks, had been born a few days earlier. We went in for the delivery on Christmas night, and he showed up right on schedule the next morning. It all went according to plan. And before we entered that meeting, the biggest concern we had about our son was that he seemed to be having some trouble breastfeeding. But everything about that room and the vibe and the looks on those doctors’ faces — it all just seemed so … ominous.
We sat down and immediately felt uncomfortable. I remember Caitlin grabbing my hand straight away.
In addition to the feeding issue, Brooks did have this thing where his thumbs seemed to be turned inward toward the middle of his palms. And the doctors also had noticed that his head was slightly smaller than most babies his size. So they had him wearing these special little baseball glove-looking things to help his thumbs move back to the proper position, and had ordered a brain MRI just to be on the safe side. They had assured us these were just precautionary measures, though, so we weren’t really too worried.
At least right up until the neurologist across the table pulled up Brooks’s brain scans on his computer. That’s when everything changed for us.
As he was pointing to different parts of the MRI images, the neurologist kept using medical terminology we’d never heard before — words that sounded truly awful, even though we had no idea what they meant. And, to be honest, we were pretty much lost and confused from the beginning. It all just seemed like double-talk.
The more we heard, the more our hearts broke.
There was one particular word that he kept mentioning, though. One word that stood out simply because it was being repeated so many times.
The neurologist eventually told us that the neurons in our son’s brain had not fully developed and referred to “a smoothness of the brain.” But it was just so far beyond our level of understanding — like a mechanic trying to explain an automobile engine to someone who has never once looked under the hood of a car. I remember at the time just kind of wanting to scream out at the top of my lungs….
“WHAT DOES THIS ALL MEAN?!?!?”
And, ultimately, they must have seen it on our faces. That we weren’t understanding. Because at one point all the medical terminology just kind of stopped, and one of the other specialists in the room put it to us straight — or, I guess, as straight as a doctor can. I’ll never forget his words.
“Your son has a serious brain malformation.”
So that’s when we found out what lissencephaly actually was. That it’s a serious medical condition affecting the brain. One with no cure.
Newborns with this syndrome go on to experience developmental disabilities, impaired motor function, seizures and many other health issues. There have been a few cases of people with lissencephaly living into their 20s, but a more realistic estimate is two to five years, max. And for those who do live to be 20, it’s not an easy life. We were told about one patient who lived to that age but was unable to speak, or even move. He only occasionally opened his eyes, and that was basically the extent of his interaction with the world.
The more we heard, the more our hearts broke.
And, truth be told, we were basically just flailing around at that point. Asking a zillion questions, but not even knowing what to do with the answers. Just before entering that boardroom, Caitlin and I had been chatting about renovation projects and wondering aloud if our older son, Brice, who was one-and-a-half at the time, was driving his Auntie Emily crazy back at the house. And then, all of a sudden, we’re being told that our newborn son may never walk or talk.
At the end of that 20- or 30-minute meeting, Caitlin was still squeezing my hand super hard. And everything we knew, every element of our existence, had changed.
Looking back on that winter five years ago when we found out Brooks was dealing with serious medical complications, one of the first things that comes to mind is how we absolutely never saw it coming. Nothing from any of our doctors visits during Caitlin’s pregnancy alerted us to any potentially serious problems. And the delivery seemed to go fine.
When he was born I remember noticing that Brooks had the biggest feet I’d ever seen on a baby, and just these giant, humongous hands — a chip off the old block for sure. We fell in love with him immediately. And we couldn’t wait to introduce him to his big brother. Brooks’s room was all ready, and it was impossible not to imagine Brice helping to put Baby Brooks to sleep at night, or singing him Twinkle Twinkle.
So that’s where our heads were at. Those are the things we were thinking about before getting that heartbreaking news from the neurologist.
But in hindsight I can’t help but recall this one experience we had just few days before that awful MRI meeting, when the universe seemed to be telling us that something wasn’t right.
The doctors had informed us that they wanted to keep Brooks in the hospital’s special-care nursery to help him work on his feeding technique but advised Caitlin and me to go home and get some rest.
We didn’t want to leave, but it’d been a long couple of days. And I remember the doctors were pretty adamant that it would for the best. Plus, they said we could come back as often as we wanted to visit our boy, and we figured it probably would be good to check on how Brice was doing back home. So we walked out into the cold, only to find that….
Our car wouldn’t start.
No matter how many times I tried, or how much I leaned into that key-turn with my shoulder, the car just totally wouldn’t start. So Caitlin and I — teeth-chattering and hands shivering — trudged back inside the hospital.
Back to Brooks.
Thinking about it now, it was almost like we were being told in that moment to stay by our son’s side and spend all the time we could with him. But, in any case, we went back up to Brooks’s room to wait for Caitlin’s dad to arrive with the jumper cables and hung out some more with our boy.
We smiled and laughed and took some really cute pictures, and just enjoyed being all together for a few more hours.
Five years later, it’s safe to say that I’ve never been more grateful for car trouble in my entire life.
Almost immediately after that meeting when we found out our child was dealing with some serious medical issues, I went into what I can now fully admit was this weird, ultra-male mode where I thought I might be able to fix everything somehow. Like I was going to somehow “solve” things, one way or another … by using the only real tool I had at my disposal.
I’d type Brooks’s characteristics into Google, hit the search button, and read everything that popped up — journal articles, blogs, message boards. Then I’d basically just kind of … freak out. It was all sad photos, and life expectancy guesses, and brain images that just seemed so dehumanizing. And I couldn’t stop clicking.
It wasn’t pretty. And it was tough to control in the moment.
But, you know, there’s no guidebook for this stuff. We were just kind of making it up as we went, doing our best, and … trying not to drive ourselves insane.
Which, to tell you the truth, wasn’t easy with all the bad news we were getting. After the doctors decided to test Brooks’s urine, a renal specialist appeared out of nowhere in the room where he was staying and told us to sit down.
I’d type Brooks’s characteristics into Google and read everything that popped up. Then I’d basically just kind of ... freak out.
“Your son’s kidneys aren’t working,” she said.
It was so matter of fact. No hedging.
It turned out that Brooks’s kidneys weren’t holding on to any of the protein he was taking in. He was just peeing it all out. There’s this test that they do on newborn children, and the protein number of a healthy baby is supposed to be three or lower. Brooks’s number was 2,478.
Not, like, four. Or five. Or seven…
Our son was just spilling protein constantly.
Caitlin immediately started talking about giving Brooks a kidney. But then, in another of what seemed like a thousand gut punches, the doctors said that Brooks didn’t weigh enough for a transplant.
It was just like every piece of news, every update … was bad.
The doctors told us that lissencephaly and congenital nephrotic syndrome kidney issues, the combination Brooks was battling, had occurred in only 50 people worldwide. That there’d only been 50 cases of this….
Thank God for Brice.
While everything was happening with Brooks, our older son was a constant source of perspective for us.
When he came to the hospital for the first time a few days after Brooks was born, his long hair was flowing, and he had his pacifier in his mouth, and his boogers were everywhere. And it was just flat out … wonderful.
Brice brought the Toy Story dolls that he’d gotten from Santa for Christmas, and when he noticed that Brooks slept with a little blue bunny, he begged us to let him give his Woody doll to his little brother. At one point he even offered to give Brooks his pacifier. It was just the cutest thing ever.
It was like: This is love!
And every time we took Brice to see his baby brother, that love just grew stronger and stronger. It lifted us up. And man did we ever need that as days turned into weeks, and things with Brooks just continued to snowball.
After a month or so, we were able to take Brooks home with the assistance of a visiting nurse, but about 10 days in he started having difficulty breathing, so it was back to MassGeneral.
Everything happened so fast after that. It was like a blur.
Brooks’s kidney readings just kept getting worse and worse, and you could tell at times that he was not doing well. He was about a month and a half old at that point, and he would really only open his eyes when it was dark. For the rest of the time he’d keep them shut. His breathing was labored. And he was constantly being poked and prodded and monitored, always hooked up to IVs and all sorts of wires that connected to who knows what.
We had been talking with a local architect about adding ramps to the house we had recently bought — and widening hallways, and doing basically everything possible to create a home where Brooks could live comfortably. But after a couple of meetings with the doctors, conversations shifted from how we were going to try to give our son the highest quality of life possible with his condition, to whether he would even survive.
The specialists told us that in order for Brooks to go on living with the kidney failure he was experiencing, our son would need to have surgery. But because his breathing was no longer strong and consistent, there was no guarantee that he would even make it through the anesthesia. And even if he did, Brooks was so small that he would need dialysis — to remove waste and fluid from his blood —every two hours, instead of the usual six. So the doctors told us straight up that they couldn’t even recommend going forward with the dialysis.
That was rough. Hearing them actually say that.
Caitlin and I both knew what no dialysis would mean. No one said it out loud, but we knew. And up until that point, we had not been willing to go there.
After the doctors left the room, we stayed behind and just cried our eyes out.
We needed to decide whether to go through with the dialysis against our doctors’ recommendation, or to take Brooks home on hospice to pass away in peace.
I honestly wouldn’t wish that sort of decision on my worst enemy.
Looking back on it, I remember Caitlin and I didn’t even really say anything to one another. We just held hands and looked at each other and cried. There was no real deliberation or conversation. We both knew. We were on the same page in every way. It was like we were reading each other’s thoughts. And then at one point, in between sobs, I spoke up.
I’m not even sure where the words came from, to be honest. I just remember saying….
“We have to go home.”
When your newborn child is going to pass away, there are all sorts of questions that you need to ask. Questions you’ve never thought about before, and never figured you’d ever need to be asking. There are a bunch of them. And they’re all terrible. But I think by far the worst one is:
How exactly is our baby going to die?
It just seems so inhumane in every way. But, at the same time, we really had no idea how it was all going to work.
And it was being left unclear because … like how do you even ask that question? How do you make it so those words come out of your mouth? I mean, I didn’t even know how to say it out loud to Caitlin. I struggled with it. She did, too.
The other really difficult question for us was whether we should try to shield Brooks’s passing from Brice — not expose him to what was happening, or whatever. As we were wrestling with that one, we had a long talk with our hospice doctor about it, and something she said to us really hit home.
“Do you guys want Brice to feel like he is a part of your family?” she asked. “Or do you want to make it so this big thing that happened in Brice’s life will be something he wasn’t any part of?”
That was all we needed to hear.
It was like, “No. Brice is a huge part of this family. He needs to be part of this with us.”
So we took Brooks home. To be a family. Together.
All of us as one.
And it was just so refreshing to be able to get rid of all those wires and just … hug our child.
We could finally stop monitoring Brooks and truly connect with him and just … allow him to be a baby. It was no longer about chasing answers, or reading medical journal articles, or trying to think of something we could do to fix our son.
We could just let him be Brooks.
We could hold him and tell him how much we all loved him.
In the final moments with our son, we sang our little guy a song that’s near and dear to our hearts. It was quiet. Almost like a whisper. But I’m positive that he heard us as we sung.
Take me out to the ball game
Take me out with the crowd
Buy me some peanuts and Cracker Jack
I don’t care if I never get back….
And when I held him in my arms and sang that song to him, I truly believe that Baby Brooks felt the boundless, never-ending love I have for him in my heart.
Brooks Stephen Hill passed away at 9:35 p.m. on February 24, 2014.
Caitlin, Brice and I loved Brooks to the moon and back, and we miss him like crazy. He remains a gigantic part of our family to this day, and moving forward after his passing has not been easy.
There’s no blueprint for how to go on after you’ve lost a newborn child.
You just kind of have to try to do the best you can. In whatever way allows you to make it to the next day.
There is no right way to grieve.
Everyone grieves differently, and nobody does it well. No one is good at grieving.
For us, talking to other people about Brooks, and how special he was, and just hearing from people who had also lost loved ones, really helped us to feel as though we weren’t alone. For whatever reason, that just made it easier to get by. We received kind letters from other parents who had faced similar tragedies, and those sorts of messages gave us hope. They inspired us to carry on.
Then, for me, there was baseball.
We buried Brooks on February 28. Six days later, I reported to camp with the Red Sox.
I needed to get away. We all did, really.
So Caitlin and Brice came with me down to Fort Myers. We went as a family.
I remember at the time a lot of people felt like that might be too soon. But it was 100% what we needed to do back then. And I guess that’s a big part of what I’m trying to get at here. Just like there’s no guidebook for how to deal with hearing that your newborn child has a medical condition that will likely take his life, there’s also not one for when it’s O.K. to try to find some normalcy again in the aftermath of it all.
No one can tell you when it’s time to get back to doing what you love to do. You just have to kind of feel your way through it.
For me, it was all about realizing that in getting back to baseball I wasn’t letting go of Brooks, or forgetting about him. It’s so easy to think stuff like that when you’re in the midst of deep sorrow. But it really is critical that, at some point, whenever you think it’s appropriate, you give yourself permission to move forward. And that you don’t judge yourself negatively, or feel guilty, for taking that step. It’s definitely not easy, but it’s essential.
I’ll never forget this one thing our hospice doctor said to me at Brooks’s burial. She put her hand on my arm, and looked me straight in the eye, and was just like, “Rich, be kind to yourself.”
And In so many ways, that simple sentiment, those four words, made all the difference in the world to me. It was almost like she was giving me permission to look out for myself and do what I needed to do in order to go on with life.
It sounds so simple. So obvious.
Be kind to yourself.
When you’re grieving, it’s easy to blame yourself, and beat yourself up, and just sabotage your own well-being, but you just absolutely have to try and remember to be kind to yourself.
These days, I’m proud to say that Brooks lives on with our family in so many ways.
My wife and I both keep his hospital ID stickers in our wallets, and Caitlin carries Brooks’s little blue bunny in her purse. Also, we just made arrangements with our town to officially name the playground across the street from our house the Brooks Hill Playground.
So every time Brice and his friends go there to play, it’ll be like Brooks is right there with him.
That’s just so fitting, too, because Brice brings up his baby brother every chance he gets. When he was younger, every time he’d find a feather on the ground it would be, “Oh look! Baby Brooks is sending us feathers from heaven.” When we do family hugs, he’ll be like, “Mom and Dad and Baby Brooks.” He never ever leaves Brooks out. And with each passing day I’m more and more convinced that we made the right call when we decided to include Brice in the final days of his little brother’s life. It wasn’t an easy decision, and everyone’s situation is going to be different, but in retrospect, for us, it was definitely the way to go.
I know our little guy is looking down right now with a big smile on his face. I know that we’re making Brooks proud.
We all see it as a gift when we’re able to hear Brooks’s name, or to talk about him. And those special moments are just a small fraction of what amounts to millions of gifts Brooks has given us.Now, five years after his passing, our family has decided to try and pay some of those gifts forward by launching a campaign to raise $1 million for MassGeneral Hospital for Children, and to support the work of an amazing, compassionate doctor who helped our family through the most difficult times imaginable.
We met Dr. David Sweetser shortly after Brooks was born, and we knew almost immediately that he was going to be someone who would be in our lives forever. Dr. Sweetser is a specialist in genetics and undiagnosed diseases. Within minutes of meeting us, he set about doing everything he could to try and figure out what was going on with Brooks. He was real with us and kept us focused on what we needed to focus on, but at every turn he made us feel valued, and listened to, and important to the process.
When Dr. Sweetser came into the room, he wasn’t looking at his watch. He was there with us. For as long as we needed him. And when he said goodbye, it wasn’t just one of those quick deals. He’d look you in the eye, and tell you to take care, and make you feel with absolute certainty that he was going to be there for you going forward.
Dr. Sweetser continued to do research into the genetic disorder that took our son’s life long after Brooks passed away, and he’s helped so many other families like ours over the course of his career. But his work is largely dependent on grants and other sources of outside funding. So that’s where we’re hoping to make a difference.
We were so proud to kick things off recently by donating $575,000 to this new campaign, called Field of Genes, in our son Brooks’s name. You can find out more at https://because.massgeneral.org/campaign/field-of-genes/c219538.
I know our little guy is looking down right now with a big smile on his face knowing that Dad, Mom, Big Brother Brice and hundreds of caring, compassionate people around the world have come together to do something truly special.
I know that we’re making Brooks proud. And that even though we’re no longer together, our son still sees just how much we love him.