Rain pelted the sidewalk as I glanced out the window towards 2nd Street SW. We were sitting at a hightop table; in the background was the sound of muffled voices and clanging dishes. Our fast-paced server brought us our menus. Brittany and I settled in to enjoy a meal and have some conversation. I’d chosen the Canadian Honker because it sits directly across from Mayo Clinic’s Saint Marys Hospital making it a geographical first-choice for many friends and family of patients receiving care at this world-renowned hospital. Brittany’s 3-week old daughter, Dylan, was one such patient. For those of us locals; however, the Honker is a first-choice simply to satisfy a craving for Bunnie’s Coconut Cake. I figured it might be the perfect sort of comfort food for Brittany.
“What was life like before this?” I asked her.
Brittany checked over the menu as she spoke. “I can't really answer what life was like before this because I don't remember. I think I did a lot of sleeping.”
“You were in school, right, when you found out you were pregnant?” I asked as I tried to focus on the menu. Who was I kidding I always get the walleye sandwich at the Honker, but maybe this time around I’d be brave and try something else.
Brittany explained that, yes, she was still in college - living in West Fargo - and at the age of 24, she had already burned through a few different majors before settling on a degree in business. She had just begun that program when she found out about her daughter, Dylan’s, condition at her 19-week ultrasound.
It’s called Ectopia Cordis and it’s rare. So rare that doctor’s at Mayo Clinic have only ever had one other patient with this congenital defect: a baby named Kieran. Below is a video produced by the Mayo Clinic about Kieran and it helps explain this condition and its treatment.
One significant difference between Kieren and Dylan is Dylan was born without a sternum, so her case is more complicated and recovery will be longer.
“You are going through so much. Especially for someone so young.” I said after we’d ordered. I went with the walleye. This wasn’t the time to casually browse the menu.
“It's amazing how exhausting it is to just sit there all day. And, its boring. I hate saying that, but it is. Like obviously I want to be there, but it is boring.”
“Oh, I’m sure it is. Especially if you aren’t able to hold her and interact with her.”
“It’s especially hard not to hold her when she's awake. Then when she makes those sad faces. It's awful. The most I can do is put my hand on her and talk to her. Or, when they're having to put things down her throat all I can do is hold her hand, because obviously its not comfortable. They don't have her sedated or anything. I know in the long run it'll be okay, but its not fun to see. I'm glad that's the only procedure I have to see.”
All those “firsts” are hard to have to delay when your baby is in the NICU. Like nursing, or holding, or rocking. Brittany has been able to change a diaper recently since Dylan’s catheter was removed. And, she was able to give her a bath. “I mean its not really a bath, but its a bath when you're in the NICU. Just washing her with a warm washcloth and soap. It doesn't take long, but it is still a big deal when you're in her state.”
within the walls of Mayo Clinic
I asked if doctor’s have given her a timeline of Dylan’s journey.
“Six months to a year unless things progress quicker than they expect. They can't rebuild the chest wall until she's six months old. Something about the way they grow...like 6 months is the best time to do it. I don't 100% understand.”
Neither do I. It’s extraordinarily remarkable that doctors can form a sternum, a chest wall, out of living grafted bone and it will somehow grow with Dylan.
There have already been some set backs; however, for Dylan. Shortly after delivery and the emergency surgery to place her heart (and other organs) into her chest, her lungs weren’t able to continue working on their own so she was placed on ECMO (extracorporeal membrane oxygenation), or life support, where a machine exchanges the carbon dioxide in her blood with oxygen.
Then, at about two weeks old, Dylan’s stomach ruptured. “I mean her stomach literally came outside of her. It wasn't pleasant for me to see and it definitely wasn't for her. Thankfully, she's on pain meds, and doctors assure me she isn’t in pain.” Brittany explained.
Even though doctors at Mayo Clinic have had one other patient with this disorder, it is still uncharted territory. “Each doctor on the case is reaching out to other doctors across the country who have dealt with this. They video conference about it. It’s nice that they have this option otherwise they wouldn't be able to work through all the things Dylan is throwing at them.”
“Like a ruptured stomach?”
“Yeah. They definitely have the resources that they need to do the best they can, but again, nothing is promised or guaranteed.” I got the impression that Brittany has full confidence in the doctors and nurses who are caring for her daughter. “It really is amazing, to me, to see all these doctors standing in a circle calculating what is best without even looking at anything. Its just in their head what they should do next. Like, how do they calculate the exact dosage to bring down her blood pressure? It blows my mind every single time they do it.”
surviving these days
But, at the same time, some doctors ask really tough questions or share extreme case scenarios that can be frightening and disconcerting. Brittany shared how one doctor, in particular, has questioned Brittany’s choice to deliver Dylan. That’s because Brittany had the option to terminate the pregnancy when they discovered her condition at 19-weeks.
Delivering Dylan has not been something Brittany regrets even though she herself wrestles with those same tough questions.
“So, do you feel like you're constantly living on the edge of a cliff?” I asked as our waitress brought us our food. It was late in the evening and Brittany and I were both hungry, so we happily dug right in.
“Yeah,” Brittany responded, “because each and every time something comes up they always tell you ‘she might not survive.’ Or, if she comes of off ECMO her lungs might not be good enough to sustain life. These are the things that are thrown at me every single day.”
I slowly took a bite of my sandwich and thought of my own children who were tucked away in their beds; asleep until morning when they would wake up. And, they would wake up. I have never had to doubt that.
Brittany is surviving these days, for the most part, on her own. Her family back home encourages her to think positively, but Brittany struggles with the fact that so much is uncertain and unknown. Dylan is blazing medical pathways as she literally advances medical knowledge and treatment with each passing day.
“But, you have to prepare yourself emotionally and mentally for whatever outcome. Still, no matter how much...you can't prepare yourself. You try.” Brittany explained. “My doctor asked me what outcome I wanted and I already said ‘I have my outcome because she wasn’t statistically supposed to be here.’”
The likelihood of Dylan’s survival to this point was only 5%. She is defying odds and overcoming obstacles. Her grip on life is matched only by the love and devotion of her mother who whispers in her ear, “You’ve got this, little one.”
What is life like these days
Life in the NICU can be isolating, but thanks to the internet, Brittany is able to read the experiences of other NICU parents and realize much of what she is going through is common to others. Like dreading phone calls, or seeing a doctor run down a hallway and wonder if she’s running to your child, or hearing the alarms from monitors in your sleep.
“And then there's those days that I see her with her eyes open and I wonder what she's thinking,” Brittany explained. “Then, I feel guilty because I wonder if this is what she wants. And, when she cries it is so hard because there is no sound with her cry. To never be able to hear your baby cry is...” She couldn’t find the words to finish.
Brittany’s experience as a first time mom is quite different than most. Very early on, first time moms learn that when their baby cries these instincts kick in to motive and send cues about what the baby needs.
For Brittany, it’s not the cry of her baby that kicks those instincts in gear, but rather it’s the ring of her phone that sets her heart racing.
“I'll set like 20 different alarms at night to get up and pump but I won't do it,” she described, “but the second I hear that phone call I distinguish the difference and I pick it up. That is as mom-instinct as it gets in the NICU.”
By this time, our meal had been cleared and dessert had arrived. The coconut cake was as delicious as always. At least I thought so. I forgot to ask Brittany what she thought of it, but then again, we were more focused on conversation than food.
“You sort of feel like you're in a movie or in a Grey's Anatomy episode when you see all these doctors and nurses running around all the time,” Brittany went on to explain. “Your life becomes not a life. More like - have you ever watched a show where you've gotten really into it and its kind of like that's your life now? Well, that's what it's like. Or, at least, that’s a way to try to explain it”
When you’re waiting at someone’s bedside you forget the outside world exists.
“I have to be selfish in this situation. I need to be especially when it comes to spending time with Dylan. I want her all to myself at this point.”
We got up to leave and crossed the street back to Saint Mary’s. The rain had stopped as we made our way up the steps to the doors of the Francis building. I walked Brittany back up to Dylan’s room and said goodnight to the little fighter. Every time I see her I find myself lingering. What a miracle. What a miracle, indeed.
October 13, 2018
On October 13, 2018, Dylan passed from this life surrounded by her mother, grandfather, aunt and other loved ones. All those who knew her are filled with sorrow, but we are so fortunate to have journeyed with her during her short life.
Much love to all…