Mitchell Family Battling Through Baby’s Medical Conditions

MITCHELL, S.D. (AP) — A photograph outlining the silhouettes of Sabreena Brakke and her son, MarcJon, watching the Fourth of July fireworks over Lake Mitchell captures a moment that doctors said the family wouldn’t share.

In his first week of life, medical personnel told Brakke and her husband, Sheldon, that MarcJon — better known as MJ — wouldn’t live to experience life outside Avera McKennan Hospital in Sioux Falls.

MJ was born 14½ weeks premature. But on June 7, he celebrated his first birthday despite battling at least 26 medical conditions, The Daily Republic ( ) reported. He has seven seizure disorders, epilepsy, heart conditions, cerebral palsy and infantile spasms, among other medical conditions.

But on Independence Day earlier this month, he spent the day at the zoo in Sioux Falls with his mom and grandparents, then had enough vigor left to spend the evening watching the explosive light show in Mitchell.

“The first time he saw a firework in the distance, he just lit up,” Sabreena said. “We rolled down the windows so he could hear them and it was like MJ came to life. He started bucking around and had such a good time.”

Delivered at 25 weeks gestation, MJ was considered a micro-preemie baby, giving him about a 50 percent chance of survival.

There are no medical explanations as to why an otherwise healthy 24-year-old Sabreena went into labor before her Sept. 11 due date. And because labor began early, doctors originally told Brakke she had a common pregnancy infection, and they planned to send her home with medication.

But doctors then realized Brakke was having contractions that began to occur in shorter intervals. The hospital staff then told Brakke that MJ was going to be born that day. Brakke was wheeled into an operating room staffed with more than 50 medical professionals from this travel nurse and medical staffing company, waiting for baby MJ to make his first appearance.

He came by means of a cesarean section — in the middle of the nurse’s shift change, keeping many for hours beyond their shift’s end.

Brakke wasn’t able to see her firstborn son for more than two hours while doctors attempted to insert IVs into MJ’s 2-pound, 7-ounce body. Nurses used an oxygen pump to manually breathe him.

“That was probably the most difficult two hours of anything we’ve ever been through,” Brakke said. “Just not even knowing what was going on, being groggy and not being able to do anything about it.”

Doctors eventually inserted an IV through MJ’s umbilical cord and listed him in stable condition.

Brakke watched as MJ was wheeled down the hallway to the neonatal intensive care unit (NICU), longing to hold her baby.

But she couldn’t. Because MJ was born without fully developed vital organs, the first two days of his life were spent under close care of medical staff.

“The first days were just kind of calm,” Brakke said. “We knew things were kind of grim, and it was going to be an hour-to-hour case. We didn’t know anything because anything could happen.”

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A happy, giggly 1-year-old, MJ now lives at home with Brakke and her parents in Mitchell while Sheldon is away for nine months, training to become a South Dakota highway patrolman.

“It has been nothing we expected, nothing we dreamed of, but more than we’ve ever hoped for. He is amazing,” said Sabreena’s mom, Kristine Schmitz. “Every time there’s something he’s up against, he is a fighter — he’s a miracle.”

But there was a time when doctors feared the hills MJ had to climb were too steep for his frail condition.

On the third day of MJ’s life, the Brakkes were about to hold their son for the first time. Sheldon noticed blood in MJ’s breathing tube and asked a nurse if that was normal. It wasn’t.

“We watched the nurse kind of go sheath white,” Sabreena said. “Doctors were flying out of their offices and people were swarming around, and we’re confused, like we have been for days.”

MJ was suffering from pulmonary hemorrhaging — he was bleeding in his lungs.

Later on, the doctors conducted a routine ultrasound to look at MJ’s brain and found he was also bleeding in his brain. On a severity scale of grade 4 being the most severe and 1 the least, MJ’s bleeding began as grade 1 on the right side of his head and grade 2 on the left.

It quickly progressed to grades 3 and 4, and as a result, his brain suffered extensive damage.

That day, Sabreena and Sheldon were told they may never take their baby home — that he was too sick and too small, because he was born too early. They were given the option to disconnect the multiple tubes and wires assisting in keeping MJ alive.

“They’re always very abrasive in the way they tell you things, because they can’t tell you it will be all rose petals and rainbows, and it was a lot to digest,” Brakke said. “I think that was the hardest thing for me to hear — sitting in the Women’s Center knowing that we might not take this perfect little thing home with us. It was overwhelming.”

Brakke’s mom was present when the doctors gave the family MJ’s prognosis.

“As a mother, that is the worst pain you will ever have because you want nothing but the best for your children,” an emotional Schmitz said. “My husband, Jon, and I left the kids after that and we went to another room, and I cried harder than I’ve ever cried in my entire life.”

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The next day, the bleeding in MJ’s lungs stopped.

“It was great because there was nothing the doctors could really do to intervene,” Brakke said. “That was very scary knowing there was nothing they could do, and it all had to be him. We needed a miracle and we got it.”

The bleeding in his brain continued for a week. As a result, MJ is missing a quarter of his brain on the left side.

An issue with spinal fluid getting built up in MJ’s brain forced doctors to “tap” into his head.

“All I had to relate this to was those Third World country commercials where they’re saying ‘donate money’ and the child has an enlarged head the size of a watermelon,” Brakke said. “And you’re thinking, ‘My child has that,’ but we have to intervene before it gets to that point.”

The “tapping,” as Brakke called it, was to alleviate the buildup and relieve the pressure of the fluid pushing on his brain.

Doctors inserted a needle into his brain about once a week to drain the excess spinal fluid. The continuous tapping caused MJ to develop meningitis, and the procedures had to be discontinued. Doctors planned to have a shunt, a narrow piece of tubing, placed to drain the spinal fluid as soon as MJ weighed 5 pounds. That day came, marking the first of MJ’s three brain surgeries — one of eight to date.

After the shunt was placed, his condition gradually improved and eventually, MJ, who at his smallest weighed 2 pounds, was healthy enough that his parents were able to hold him for the first time. He was still so small and was hooked up to a number of machines and monitors that Brakke said it was “almost painful” to hold him.

“That first day I held him was the best day of my life,” she said. “He was so small and you never expect an experience of having a child to be the way that it was. But it was insane to know this itty-bitty, little 2-pound thing can fight harder than you’d ever imagine you’d ever be able to do yourself.”

MJ spent 88 days in the NICU at Avera McKennan hospital before he weighed nearly 6 pounds — the target weight to be sent home.

One day, MJ’s neonatologist — a doctor who specializes in premature and ill newborns — asked Sabreena and Sheldon when they hoped to go home. The couple, who at the time were living in the Ronald McDonald House on the hospital’s campus, jokingly responded they wanted to go home that Wednesday — less than a week away.

“To be honest, we didn’t think we were going to go home,” Brakke said. “But then he said, ‘We’ll get you out of here Wednesday.’ ”

In the NICU, Brakke said parents of premature babies are told to expect them to be in the hospital up to six weeks after their due date.

The Brakkes took MJ home on Sept. 3, eight days before his expected due date.

“That was awesome, and was like the cherry on the cake,” Brakke said. “He beat his due date and he’s doing so well that he can go home. He made it through more and has continued to make it through more than we ever would have.”

NICU Journey Beads is a national program in which premature babies acquire a single bead for every medical procedure or milestones met, whether it be having an MRI done, feeding for the first time, wearing their first outfit or an act of bravery. The beads are then strung by nurses attending to the baby.

MJ accumulated 330 beads during his nearly three-month stay in the NICU — about four per day. After leaving the NICU, the beads serve as a roadmap of the obstacles MJ has overcome.

“We can walk through his journey with him someday and say ‘Wow, look at all of the things you have overcome,’ or ‘Look how far you’ve come since day three,’ ” Brakke said.

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Since returning home, between doctor visits and therapy appointments, MJ has spent about five of the eight months in the hospital to receive medical attention. In that time, MJ has been able to come off many of the machines he was on when he left the NICU.

Initially, MJ was still on oxygen and hooked up to monitors and machines, making the transition of being home difficult. Brakke said MJ’s machines were to him what a security blanket or stuffed animal are to a healthy child.

“I always joked that I had room on my arm for his machines and maybe my purse on the other, but I never had enough room for my own baby,” Brakke said.

Every three hours, MJ needed food, medicine or one of his machines checked. Once one task was finished, it was time to undertake another.

“I think one of the best days was when his oxygen and apnea monitor got discontinued and all you had to do was lift up a baby,” Brakke said. “It’s what people take for granted to just be able to get to pick up your baby and not have to worry about an oxygen cord getting stuck or his poor little head getting yanked around. He’s less of a patient now and more of a child.”

All of the medical conditions MJ has dealt with stem from his prematurity, or the brain and lung hemorrhaging he experienced.

The most concerning condition to doctors right now are the infantile spasms, which are a type of seizure disorder. Each attack damages MJ’s brain a little bit more.

In an attempt to get the spasms under control, MJ recently began a medication regimen as a last-ditch effort to avoid having surgery to remove the damaged portion of his brain. The medication, compounded at a specialty pharmacy in France, worked for MJ and gave him 24 hours of relief. But then MJ broke out in a rash that doctors at the Children’s Hospital in St. Paul, Minn., attributed to the medicine.

“It was like a light bulb came on in MJ’s head,” Brakke said. “He wanted to play, he was screaming, he was active. And we were like, ‘This is it — this is the drug for him.’ Then he gets this rash and it’s devastating.”

Doctors stopped administering the medication for four days, allowing it to leave MJ’s system. Then they attempted a re-trial — and this time, MJ was rash-free.

The medicine again worked for a while — this time a few weeks, before MJ began experiencing infantile spasms again. Brakke and MJ are currently in St. Paul at the Children’s Hospital working with doctors to determine if there is an alternative medicine, or if surgery will be the best option to remove the damaged portion of MJ’s brain.

“Everything that MJ is going through is caused by that structural damage in his brain,” Brakke said. “You can’t make that structural damage go away without surgery, so the problems that come with it won’t cease to exist unless the medicine works or you take away that damage.”

MJ has also had trouble feeding, and had a tube placed in his stomach — a tube that is inserted through the abdomen and delivers nutrition and medicine directly to the stomach. During that procedure, doctors also tied off his stomach due to a severe case of acid reflux. Essentially, things can go down to the stomach, but nothing can come up.

Brakke said doctors estimate most premature babies, for the first few years of their lives, don’t fall on their age-to-growth charts, which show the standard deviation from the mean for average height or weight for the child’s age. But MJ, who weighs 24 pounds, is already in the 20th percentile of boys his age.

“That’s something we can be so proud of, because we know it’s not something he’s struggling with and he’s obviously getting his nutrition,” Brakke said. “I just wonder with all of the weight he’s lost along the way, how big he’d be if he hadn’t. He’d be like a Michelin baby.”

Every week physical, speech and occupational therapy comes to the house to help MJ reach his potential. Kris Krouse, a physical therapist with the James Valley Educational Co-op, said the 45-minute sessions once a week, working on things like rolling over, sitting up and head and neck control, aren’t enough to boast positive change in MJ’s body. But what Krouse teaches the family will make the difference.

Krouse works with MJ as part of South Dakota’s Birth to Three program that provides early intervention services, at no cost, for children from birth to age 3 who have a disability or a developmental delay.

“When I leave, I know what we worked on that day will be worked on daily until I come back,” Krouse said. “MJ would not be where he is today without Sabreena working so hard, and that gives me such a good feeling when I leave every week. He gets stronger and stronger every single day.”

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Caring for all of MJ’s special needs can be expensive. His monthly food supply — a formula only available in pharmacies — costs nearly $1,300.

On Sept. 12, Sabers Victory Motorcycles is holding a benefit for Gianna Wehrkamp, a 2-year-old Sioux Falls girl who died in January from complications from influenza A. There will be a dice run, car show and live music beginning at 9 a.m. at the Sabers parking lot in Mitchell.

The Mitchell Area Lego Club will sell food and provide entertainment for kids, and the funds raised from food sales will be given to the Brakkes to help support the medical bills that come with caring for MJ. When she was approached by the club and asked if she would be interested in being a part of the benefit, Brakke — who advocates that knowledge about premature births is vital — said she didn’t hesitate.

She also sees the benefit as an opportunity to show area residents that there are inspirational stories close to homes.

“You see the news and things are so negative these days,” Brakke said. “The focus is on the wrong things. What about these miracles? What about these amazing things that come from nothing?”

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Moving forward, there is uncertainty around what MJ will be able to accomplish. Doctors don’t know if he will eventually be able to walk on his own, if he’ll need a walker or maybe a wheelchair.

They don’t know if he’ll ever consume food through his mouth. Brakke remains hopeful, but realistic, about MJ’s future, saying rather than celebrating milestones like most families do with their babies such as first steps and first words, they celebrate stepping stones, because “without inches, there can’t be miles.”

“There’s so many things that are uncertain about MJ’s future, so we have to celebrate what he’s doing now, because what he’s doing now is important,” Brakke said. “I wish everything for him. I really do. Seeing from where he was and hearing that he would never come home and knowing where he could go, where he might go, where he will go is empowering. He might never, but he might.”

Before MJ was born, Brakke and her husband, Sheldon, were living their dreams in Minnesota. They were having a new home built, both accepted new jobs — she as a cosmetologist and he as a firefighter — and even had a nanny lined up to help take care of their baby. Karen’s Nanny Agency helps them find a trusted nanny that will match their family’s needs.

But they moved to Mitchell because of their job situations and to be closer to family once MJ was born.

Now, it’s a life of hospitals, medical terminology — and a little boy who they say has brought more joy to their lives than money could buy.

“It all changed, and it didn’t change for the worse, but it changed and it was different,” Brakke said. “We’ve learned to accept those changes and realize that we could have had all of those things still, but never had MJ. Instead, we have MJ.”

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Information from: The Daily Republic,