Medically Complex Maddix
Since seven-year-old Maddix was born, he has battled pneumonia, strep throat, seizures, acid reflux, migraines, apnea, feeding issues, breathing issues, and more. Doctors do not have one diagnosis—they have several. He is medically complex.
And that is only part of his story.
Maddix was born eight weeks early. When his mom, Tasmah, went into labor, she was life-flighted to Sioux Falls. Both Tasmah and Maddix were in danger.
“I was pretty much dead,” said Tasmah. “I was so sick; I needed to deliver right away.”
Tasmah suffered from HELLP syndrome, a life-threatening condition with serious complications for pregnancy. The condition is characterized by hemolysis, elevated liver enzyme levels, and low platelet levels. Its cause is from pre-eclampsia/high blood pressure and it has wide-ranging symptoms that have lifelong effects.
Despite complications, Maddix was born and immediately moved into the neonatal intensive care unit (NICU). Because Tasmah was dealing with her own sickness, she was unable to see him for quite some time.
Maddix graduated from the NICU and was admitted to the hospital, where he had his first fundoplication procedure—a surgery for gastro-esophageal reflux disease. The weeks in the hospital became months. After many tests, consultations, and hospitalizations, doctors recommended the family visit Mayo Clinic in Rochester. Because Maddix was so sick, traveling to Rochester was a challenge—even his first appointments were cancelled.
Once they were at Mayo…things moved quickly.
“We had so many appointments in a two-week time frame,” Tasmah said. “I can’t even tell you how many doctors we saw. Mayo has so many specialists, but they all work together as a team—they all know you and your child.
“As a mom…it’s very special.”
Maddix had another surgery for his reflux, but he was still very sick and still struggling with his breathing. After studies, x-rays, tests, MRIs, and more, doctors discovered a laryngeal cleft. A laryngeal cleft is a rare abnormality involving the larynx and esophagus and negatively affects feeding and induces coughing, among other things.
“The laryngeal cleft explained so much,” said Tasmah. “He was always sick, but never contagious. And it was because he had another rare condition.”
Maddix has traveled to Rochester and Mayo Clinic regularly over the past seven years. He has been both inpatient and outpatient, staying longer than expected on numerous occasions after complications arising from surgeries and infusions. For example: a routine tonsillectomy resulted in more than a one-month stay.
And when stays have become longer than expected…the Ronald McDonald House of Rochester was there for Tasmah and her family. The family has stayed at the House on eight separate occasions for a total of 65 nights.
“You think you’re going to go home, and then you don’t get to go home,” Tasmah said. “So, we stay in Rochester. And we stay at the House.”
Maddix also has high-functioning autism, which makes him sensory sensitive. The House is a calming place for him, which means so much to his mom.
“It’s so overwhelming to think about the House,” said Tasmah. “I can’t believe how people care so much about others. You say thank you, but it’s not enough.
“It’s truly amazing.”
During stays at the House, Maddix formed a strong connection with Paw Pals. Paw Pals is the House’s pet therapy program, offering children and families the opportunity to connect with pet therapy dogs who visit the House on a regular basis with their dedicated owners.
“The way he acted with the dogs—he was so calm and happy,” Tasmah said. “We added Finnley (a Teddy Bear dog) to our family because of Paw Pals. When Maddix is having a difficult time, Finnley does not leave his side. They have a very special bond.
“And it’s all because of our experience with Paw Pals.”
In addition to activities for her kids, Tasmah said the relationships she formed with other moms and families had a long-lasting positive effect. During a one-month stay, Tasmah and four other moms spent every evening together while their kids played together at the House.
“Everybody is there for different reasons, but everybody is there for you,” said Tasmah. “It was so meaningful to have friends—the House gave us that gift.
“I don’t have words for it…it’s an incredible thing.”
Tasmah also mentioned volunteers and how they keep the House clean and safe for her children and are always willing to listen and go out of their way to make families feel at home.
The Ronald McDonald House of Rochester, like many other organizations, was forced to adjust its services during the COVID-19 pandemic. The House began providing food bags and activity bags for families traveling to Rochester who were unable to physically stay at the House.
Tasmah and her family received food and activity bags on a recent visit.
“Even though things are different due to the pandemic, the House still found ways to support us,” Tasmah said. “The House helped us book a hotel room, gave us meals and snacks, games and activities, gift cards for gas stations and restaurants…
“When your child is sick, there is already so much to worry about—the House makes it so you don’t have to worry about those other things.”
Maddix will continue to have appointments at Mayo Clinic in Rochester and the family will continue to stay at the House. And Tasmah says they will continue to support the House in every way possible.
“If you want to support an organization, support the House,” said Tasmah. “We were so overwhelmed by the love and support. It’s real. And it’s incredible.
“We would not be where we are today without the House.”