Kelsey Ferguson and her husband Scott had been together since their senior year of college and always dreamed of being parents. Never, in a million years, did Kelsey think that Scott would never meet their son. But a life-altering diagnosis made the unimaginable a reality.
When the couple got married in 2016, having kids was a high priority for them after being together for seven years. They decided to try and conceive soon after the wedding, but they struggled to get pregnant. After working with fertility doctors, they were elated to see their baby's heartbeat on an ultrasound at a 9-week appointment, only to be devastated three weeks later when Kelsey miscarried.
In November 2017, Kelsey and Scott conceived again but at their 20-week ultrasound they were given bad news: the baby had a heart defect and likely a chromosomal abnormality.
"We were originally told the baby wouldn't survive," says Kelsey.
The news was traumatizing. They went on to do some further genetic testing, preparing for the worst that week. But the news wasn't all bad—in the middle of April they found out that although the baby still had a heart defect, survival seemed likely, so they moved forward celebrating the baby. "We just prayed that everything would work out," she says.
Courtesy of Kelsey Ferguson
Navigating a Shocking Diagnosis
In June, doctors wanted Kelsey to start coming to Children's Hospital of Minneapolis near their home in Prior Lake, Minnesota twice a week to measure movement and test the fetal heart rate. Her doctors knew that at any time she could be admitted if the baby wasn't doing well. This ultimately happened on June 4, 2018, at 33 weeks into her pregnancy, after a weekend of the baby not moving as much as expected.
Scott went to work that day per usual, then came to visit Kelsey at the hospital immediately after. When he arrived, he was very pale and didn't look good, so Kelsey sent him home to rest. Throughout the whole spring, Scott was feeling a little under the weather, but they continuously brushed it off as allergies, stress about the baby, and the fact that he had just started a new job.
Late that night, Kelsey woke up to a slew of texts from Scott explaining that he started coughing up blood and took himself to the local hospital. Doctors there thought he had pneumonia and transferred him to Abbott Northwestern Hospital, which is connected to the Mother Baby Center where Kelsey was admitted.
Soon after he was admitted to the hospital, Scott was diagnosed with Wegener's vasculitis (which is now called Granulomatosis with Polyangiitis (GPA) vasculitis). According to the Vasculitis Foundation, the disease is "a family of rare disorders characterized by inflammation of the blood vessels, which can restrict blood flow and damage vital organs and tissues."
The symptoms are often similar to other sicknesses—including allergies—like sinus and ear pain, hoarseness, and eventually, more serious symptoms like Scott's, coughing up blood and shortness of breath. For GPA Vasculitis, early diagnosis is key to prevent organ failure.
An Unexpected Turn for the Worse
Kelsey didn't understand much about Scott's condition except that he was sick and needed oxygen immediately. Since they were both admitted to connected hospitals, they spent the following day together just chatting over lunch about random stuff. A few days after Scott's arrival, Kelsey suggested that he sleep in but then got concerned when she hadn't heard from him by 1 p.m. His doctor called her room and told her Scott was struggling to breathe and needed to go into the intensive care unit. From there, things started to spiral downward and Scott needed to go on a lung bypass machine to give his lungs a break. From there, his heart stopped and he needed to use a heart bypass machine as well.
"I sat in a chair in the family waiting room and just stared and waited for him to be moved out of the operating room," says Kelsey.
After 90 minutes of CPR, Scott's doctors were able to get a very weak pulse, but it didn’t hold. Kelsey was able to see Scott and hold his hand and talk to him while he was in a coma, but in the end, there was nothing more that doctors could do. Scott died a little after midnight on Thursday, June 8, just four days after being admitted into the hospital. As a result of the stress of Scott's diagnosis and death, Kelsey had passed out multiple times and was not doing great. Concern quickly became about the health of the baby and Kelsey's doctors decided to induce her the following Monday, June 11, because the baby's heart rate was starting to drop.
A Bittersweet Miracle Birth
On Tuesday, June 12, Kelsey gave birth to a two-pound, four-ounce baby boy via C-section at 33 weeks. He came out breathing on his own and screaming—something nobody thought would happen because of his heart condition and chromosomal defect.
Courtesy of Kelsey Ferguson
Kelsey named the baby Maxley after Scott's grandfather. In what would continue to be a journey of extreme highs and lows, Kelsey was the one who had to tell her in-laws about Scott's death, but she was also able to share with them the specialness of the name they chose, something Scott had looked forward to.
After 99 days in the NICU, Maxley went home in September only to turn around and have open-heart surgery when he reached around 11-pounds. While surgery initially went well, Maxley ended up needing more medical treatment over the following weeks and was put on life support for 25 days.
"I remember sitting in that hospital room thinking that 100 percent Maxley would not make it," says Kelsey. "I just knew, he was just so sick."
But Maxley did survive and continued to make huge strides in his health—his doctors were able to take him off of life support because he was able to breathe on his own. After 112 days in the hospital, Maxley finally came home again. Now at 17 months, he is hitting milestones Kelsey could have only dreamed of. He just started to crawl a few months ago.
"It was amazing! I cried," she says. "Doctors all kept saying the worst—we never knew if he would walk or talk. The fact that he's making incredible strides is amazing to watch."
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A Long Road Ahead
More than a year later, Kelsey is still grieving the loss of Scott deeply. "I miss him more than anything," she says, "but I just try to get by day-to-day not thinking too far in advance or I can't breathe." And she is so thankful for Maxley every single day. "Even if I am mad or sad or yelling, I am still so grateful," she says. "I could not imagine having lost him."
That's not to say things aren't very difficult for her as a parent. Maxley has does have sensory challenges, which require a lot of specialist and doctor appointments. He is still on a feeding tube and he is on about 16 different medications all for various things including some for pulmonary hypertension, a couple for his heart, several for digestion, and other vitamins and probiotics to keep him healthy.
Kelsey currently works full time at Lifetouch, a photography company out of Minnesota, and writes on her blog, Honeyed Heart, about Scott, Maxley, and all of the little wins and hardships that come her way.
Now that she feels like she can put one foot in front of the other, she is turning her efforts toward helping other people who may be in a similar situation. She's started to learn more about vasculitis and has realized how often the disease is misdiagnosed and wants to change that by raising awareness for early symptoms. To do this, she attended a convention in July through the Vasculitis Symposium, so she could learn as much as possible about the disease and meet others who are dealing with all that it brings.
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"Early diagnosis is huge—Scott had every sign in the book," she says. "I'm trying to promote early education to teach doctors to look for the signs. It can honestly save lives and if getting educated on this disease could save just one person, I would love that."
Although Kelsey has regrets about not knowing the seriousness of Scott's situation earlier since she was not able to plan or ask him about his wishes for the future, she does know that doctors did all they could.
And her new mantra: "Cherish what you do have—squeeze your kids tighter, hug your husband, let fights go," she says. "I don't feel like I took anything for granted, but I know it's still never enough."