Boston’s Type 4 Cleft Journey
By Brittnee Anderson
Brandon and I were ecstatic to see our baby during our ultrasound appointment. Would this little one look like his big brother, Brooks? The ultrasound technician snapped multiple screenshots, her eyes completely focused.
“There is a black dot,” she said.
Doctors told us that our child’s stomach appeared to be in his chest. Eight weeks later, I had a full body MRI to better understand what the suspicious black dot indicated. We were thrilled to hear the doctor say, “We were wrong. He may have a hiatal hernia or a different condition, all which we frequently see.” Such a relief compared to our previous news.
Finding our little one’s heartbeat was tricky, so I was hospitalized for a week. During this time, I learned I was carrying a large amount of extra amniotic fluid. By 35 weeks, my blood pressure had reached a dangerous level. Anticipating a healthy baby, the focus now switched to my health and a cesarean delivery quickly followed.
Day 1: March 3, 2022
I was able to briefly look at my newborn son before he was taken to a separate room. Brandon followed our boy. Boston was put on oxygen, CPAP or both. Honestly, everything that happened right away is all a blur to us. Three hours later, I was able to see Boston in the NICU.
“Congratulations!” the medical staff said as they laid him on the infant bed. We thought he was good to go and it was a time to celebrate, but when I heard my baby cry, I knew. As a mom, I knew his baby dinosaur cry was not right. Our son was breathing on his own, requiring very little additional oxygen, but I knew something was not right.
On day 2 we tried to feed him. Boston coded. We tried again, and the same thing happened. Numerous tests were ordered over the next week, trying to pinpoint the reason my son could not eat.
Day 11
Boston had his first bronchoscopy. The doctors approached us, looking as though they had seen a ghost. In a separate room they told us, “Boston has a laryngeal cleft type 4. With surgery, there is a 50 percent survival rate. None of us here have attempted this surgery.” We were handed a one-page sheet, basically explaining a laryngeal cleft. Intense grief overcame us hearing we may lose our son. The code-blue alarm blared in the NICU. People were rushing to Boston’s room - my Boston’s room. It was honestly the worst day ever.
Day 13
A compassionate nurse researched laryngeal clefts. “I found someone at Cincinnati Children’s Hospital, Dr. Michael Rutter, who has experience with laryngeal clefts,” she said. This was the best news I had heard in days. I suddenly felt a rush of adrenaline. Hearing this gave me hope that Boston might have a chance to live. Our first thought was how quickly can we get our baby to Cincinnati? The answer: that same day.
Boston and his older brother, Brooks, were baptized minutes before Boston took his first flight. It was uncertain if Boston would survive the trip. A team of medical professionals diligently cared for our baby from Minnesota to Ohio. Brandon and I had to fly separately. It was a huge sigh of relief to learn Boston had safely arrived at Cincinnati Children’s Hospital.
Day 19
“Good job getting him here. Now we need to wait three to four months for him to weigh 5 kilograms,” said Dr. Rutter.
How can my little one manage that long with a big gaping hole in his trachea and esophagus? I naively thought surgeons would bring him into the operating room, stitch him up, and in a few weeks, he would be able to eat, drink, and talk. For him to reach 11 pounds felt so far away. Hearing we had to wait was devastating.
Day 106
It was time for Dr. Rutter and his team to repair Boston’s trachea and esophagus. The open repair procedure lasted 16 hours. We could not speed his surgery or recovery. Five weeks of medically induced paralysis gave his repair time to heal. Boston now breathed through a trach tube in his throat. A trach is hard, but for the first time, I could see his face without tape, a tube or a mask. I was crying before I first laid eyes on my boy’s precious face.
Brandon and I could not hold him during these weeks of recovery. A nurse and respiratory therapist worked together, carefully repositioning Boston every two hours. We talked to our son, read books, listened to music, told him about his brother, and shared about our day. When it was safe, I held Boston. It was the first time I held him with a trach. I worried about hurting him and it was scary at first, but more so, it was the best feeling ever. I held him for five hours straight.
At the end of summer, I had to return to my teaching job in Minnesota while Brandon stayed in Cincinnati with Boston. Brandon and Boston flew back to Minnesota on October 1, 2022. My family was once again in the same state.
Boston was still receiving all of his nutrition through an IV. A GJ-tube was surgically placed later at the Minnesota hospital. Eventually, my son transitioned to tube feedings.
Day 498
Boston had lived his first 498 days in the hospital. Leaving the hospital, I literally have no words to describe it. There were times I did not think it was going to happen. And now, for the first time, Brandon and I left the hospital with both of our boys.
2 years old
Today, Boston has the master bedroom on the first floor, which includes a big closet and private bathroom for the homecare nurses. Medical equipment and supplies fill our first level. Our oldest son, Brooks, was 15 months old when his little brother was born. Understandably so, Brooks has had a rough go because Boston’s care always requires extreme vigilance. As parents, we must be intentional about Brooks’ well-being as well as Boston’s.
We need to live. It takes a long time to get ready and leave the house, and thankfully, now we have a system down. The other day we went to a local park where Boston sat in a swing for the first time. It was a beautiful moment.
Boston’s type 4 laryngeal cleft is currently a type 2. In the summer of 2024, we plan to return to Cincinnati for a check-up and eventually, another repair.
Now at age 2, Boston has made us all stronger. He has made us better people. He still has a trach, but amazingly, he has now weaned off the ventilator during daytime hours. His breathing has a noisy gurgle to it, even after we suction his trach. He receives all his nutrition and hydration through his GJ-tube. Boston is hearing impaired and is getting a new hearing device.
At 2 years old, we are blessed to already see Boston improving so much. We know he is capable of great things and look forward to what he will accomplish next.