Tag Archives: Luellen Seals

‘Miracle’ Meagan turns 3

Photo: Luellen Seals holds her daughter, Meagan during her third birthday party at the Lord of Life Church in LaFox on Sunday. Meagan was born with several health problems and wasn’t expected to survive but now she is beating the odds. The Seals family has a Facebook page, “Meagan Seals, Miracle Baby,” which is set up to tell her story. Photo by John DiDonna

by Chris Paulus
ELBURN—Doctors three years ago advised Elburn resident Luellen Seals to terminate her pregnancy because of the slim chance of her unborn daughter surviving.

Luellen’s daughter, Meagan, who suffers from the conditions encephalocele, microcephaly and lissencephaly, celebrated her third birthday on Sunday at Lord of Life Church, located on the corner of LaFox Road and Route 38 in LaFox. The event was open to the public.

“We were told that she was not going to be living this long. Most do not survive the encephalocele,” Luellen said. “Doctors said that the CT scan looked like someone that had gotten hit by a car going 100 miles per hour.

Luellen said it’s been a trial-and-error type of experiment in trying to figure out which combinations of treatments work best for Meagan’s seizures. She recently had a good visit with the neurologist.

Since her birth, Meagan has been making great progress. She can accomplish many things she wasn’t able to a year ago. She can now say words like “mama,” “up” and “hi.” She’s able to track movement. She still responds positively to music and other sounds. She acknowledges her name, and she smiles and shows other facial expressions.

A specially-designed wheelchair, donated by community members and Lutheran Church Charities, has helped with Meagan’s physical development. Although she cannot sit up and walk on her own, her back is getting significantly stronger because of the support of the wheelchair, which allows her to build muscles. She can also army crawl around the room and move around.

“Doctors said that she wouldn’t be able to do most of that. The wheelchair has been extremely helpful,” Luellen said.

Meagan’s had a lot of pleasant surprises in the last year, and has had her share of stardom, too. She met Christian music artist Jeremy Camp, who dedicated the song “Walk by Faith” to Meagan and sang it to her at the Compass Church in Naperville, Ill. She also won a Halloween costume contest that gave the family a month’s worth of baby formula. For a family that spends about $80 a week on high-calorie formula, that’s quite a relief.

Meagan is the youngest of the Seals’ four children, and she now has a Facebook page—“Meagan Seals Miracle Baby”—that helps keep the Seals in touch with other families that have members afflicted with the same disorders. The page also features Meagan’s medical records, videos of news coverage and updates on how she’s doing.

“There’s nothing positive when you search these disorders on Google. We’re kind of hoping to use (the Facebook page) as a tool for change,” Luellen said. “We’ve gotten in touch with other families that have children that have the same afflictions. We share ideas on what kind of treatments work the best and what doesn’t.”

Luellen said her family has met most of these families in person, some even overseas.

“We carry on conversations about how our kids are developing,” said Luellen.

For community members and local residents interested in donating, there is an account set up for Meagan at the Old Second Bank. Residents can also visit www.lutheranchurchcharities.org/ to donate to the Meagan Seals Fund. Donations are tax-deductible through the church and will go 100 percent toward Meagan’s medical bills and purchase of a wheelchair-accessible vehicle.

More miracles for Meagan

Photo: Luellen Seals tells her daughter, Meagan, about her new chair thanks to the efforts of Lord of Life Church and Lutheran Church Charities. The special wheelchair was delivered to the Seals family home in Blackberry Creek on Friday, Dec. 23. Photo by John DiDonna

Community donates wheelchair for 2-year-old who defies all odds
By Keith Beebe
ELBURN—Scott and Luellen Seals of Elburn had spent the last year in search of donations to be put toward a custom-built wheelchair for their 2-year-old daughter Meagan, who suffers from the conditions encephalocele, microcephaly and lissencephaly.

The Seals’ insurance provider considers Meagan “terminal” and doesn’t cover any of her medical costs, so the family had no way to pay for an expensive chair that would allow their daughter to physically develop and move more freely.

Then, on Dec. 23, a group of 60 Christmas carolers gathered in front of the Seals’ home and presented the family with three surprise gifts: a custom-built wheelchair, an iPad and a stationary chair for Meagan.

“At first, I thought, ‘Look, they’re Christmas caroling,’ and I didn’t think anything of it. And then I saw a few people taking pictures, so then I wondered why they were (doing that),” Luellen said. “When I saw the wheelchair and the other chair coming up the driveway, I started crying because I knew what they were up to.”

The carolers, which included members of Lutheran Church Charities and the Seals’ church, Lord of Life Church in La Fox, were the ones who donated money for the three items. The wheelchair is valued at just under $6,000, and the stationary chair and iPad are each valued at $500.

Conley Outreach and Kaneville United Methodist Women also donated money toward the wheelchair.

“I met the Seals family two years ago, shortly before Meagan was born. Some of their neighbors had invited them to come to Lord of Life during Luellen’s pregnancy,” Lord of Life Church Pastor Phil Ressler said. “They had been told to have an abortion because Meagan would not survive the delivery. In spite of the grim outlook, Meagan was born.”

Pastor Ressler earlier this month told Lutheran Church Charities President Tim Hetzner about the Seals and their pursuit of a chair for Meagan. Hetzner called the chair manufacturer in Matthews, N.C., but was told that the wheelchair couldn’t be built until the Seals’ insurance provider approved payment for the item, and even then, it would take three months for the chair to be built.

“I explained the Seals’ situation to (the manufacturer) and guaranteed the payment of the chair, but told them we had to get it by Christmas Eve,” Hetzner said. “They called me back, moved some things around, made the chair that day and overnighted it to a place in Lombard (Ill.). That Friday (Dec. 23), we took the chair plus an inside chair that was needed for little Meagan.”

According to Hetzner, the iPad was donated because it has several apps that handicapped children can use to develop sensory skills.

Encephalocele is a neural tube defect where the brain begins to form outside the human skull. Microcephaly is a disorder where cranium circumference is considerably smaller than average, and lissencephaly is a disorder where the brain is smooth, resulting in severe neurological impairment.

“We knew before she was born that she was going to have an issue with her brain, but we weren’t sure exactly what the extent of her (condition) would be,” Luellen said. “Doctors have told me that one out of 10,000 pregnancies each year will result in this condition, and those babies are usually stillborn or die at birth. If they do survive, they’re usually on oxygen or a feeding tube.”

After Meagan was born, her doctors noticed that she was developing physically and breathing on her own despite suffering from encephalocele. Meagan then underwent a surgery to repair her skull, which was when doctors realized she was suffering from other conditions, as well.

“They told me that, with lissencephaly, Meagan probably wouldn’t live very long, so they sent us home with hospice. Here we are, two years later, and Meagan’s still with us,” Luellen said.

Meagan is the youngest of Scott and Luellen’s four children, including Ryan, 22, Madison, 5, and McKenzie, 3. The Seals family has a Facebook page, Meagan Seals Miracle Baby, which is meant to tell Meagan’s story.

“I want to get the word out about Megan’s story—not for financial reasons, but because through Facebook, we’ve met quite a few families who have children with disabilities similar to Megan’s or have families with terminal children,” Luellen said. “It’s been nice to meet other families that are going through what we’re going through.”

Meagan continues to slowly develop physically, but she is very handicapped mentally and physically, unable to crawl, walk or even sit up on her own. Still, she knows her name, recognizes her sisters and smiles at the sight of specific toys. Meagan also loves to listen to classical and jazz music.

“She loves to sit in her swing and rock back and forth, and there’s a lot of things she knows. She’s developing at her own pace,” Luellen said. “It’s been a struggle and constant worry for us; however, it’s been a blessing in so many ways, as well. She’s really changed our lives.”

Many well wishers gather outside the home of Scott and Luellen Seals in Blackberry Creek to watch them receive the special wheelchair for their daughter, Meagan. Photo by John DiDonna

The Seals family opens the door to find Pastor Phil Ressler and several dozen well wishers in front of their house on Friday, December 23. Photo by John DiDonna

Tim Hetzner, President of Lutheran Church Charities brings in the special wheelchair for Meagan Seals. Photo by John DiDonna

Friends show ‘neighborly love’ for Seals family

by Martha Quetsch
ELBURN—When Meagan Seals of Elburn was born nearly seven months ago, her parents and doctors did not expect her to live more than two weeks. Her mother Luellen said Meagan has been a miracle baby, not just surviving but thriving to a degree no one imagined was possible. However, she still faces significant challenges.

Meagan was born with microcephaly, a rare neurological condition in which an infant’s head is significantly smaller than the heads of other children of the same age. Children with microcephaly often have developmental issues. She also has encephalocele, another rare disorder that prevents a baby’s skull from closing completely before birth. After Meagan was born, she had surgery to reinsert brain tissue and close the gap.

When Meagan was born, doctors also said the top part of her brain was missing. However, when Meagan had an MRI when she was 6 months old, the test showed that her upper brain was there.

“Her doctor believes she is a living miracle,” Luellen said.

Based on the conditions she does have, Meagan was not expected to be able to hold up her head or even drink from a bottle. But she surprised everyone when she could do both soon after her parents took her home.

Despite these miraculous milestones, Meagan is not able to sit up and faces many other developmental challenges in the future, her mother said.

“The doctors say she might get to a 2-year-old level,” Seals said. “They don’t think she will ever talk or walk.”

Earlier this summer, Meagan began experiencing up to five full seizures and 30 to 50 smaller spasms daily and had to be hospitalized. This month, she is receiving injections of a serum that costs $30,000 per vial. She still has the seizures but not every day.

Meagan’s parents’ goal is to provide her with whatever medication, medical equipment or therapy that will help her to develop as much as she possibly can.

Although their health insurance covered many of the hospital expenses for Meagan, the Seals still owe thousands of dollars in medical bills. In addition, they are concerned that insurance will not pay for equipment that will help Meagan in the future, such as a feeding chair that would support her in a sitting position, and water therapy.

Since Seals must care for Meagan full-time and the family has only her husband’s income, she is grateful that several of her friends are hosting a fundraiser Friday, Aug. 6, at Old Towne Pub and Eatery, to help with those expenses.

“It just shows that there are people in the world with good hearts,” she said. “It’s neighborly love.”

One of the fundraiser organizers is the Seals’ neighbor, Kim Cole. She wants to help raise awareness of Meagan’s condition and to raise money to help the Seals family.

“Meagan will have a life time of medical needs and expenses,” Cole said. “It’s more than the family is able to cover on their own. I am hoping the community will pull together and help them to help her.”

Fundraiser for Baby Meagan

Friday, Aug. 6 • 6 to 8 pm
Old Towne Pub & Eatery
201 W. State St., Geneva

Raffles and silent auctions
Tickets cost $25 per person

For reservations,
call Ali at (630) 605-1007 or
Jen at (630) 437-1985

Send donations to
“Praying for Baby Meagan”
Old Second Bank, P.O. Box 8018,
Elburn IL 60119-8018

‘Miracle’ Meagan

Elburn family’s baby beats odds of survival
by Martha Quetsch
ELBURN—When Meagan Seals was born Nov. 10, 2009, her parents and doctors did not expect her to live more than two weeks. Based on her rare condition before birth, she was not expected to be able to hold up her head or even eat, much less survive.

Now, nearly three months later, Meagan is healthy and has met developmental milestones no one ever expected her to achieve.

Meagan’s mother, Luellen Seals of Elburn, was over 40 when her baby was conceived, so her pregnancy was considered high-risk. Because of that, she had ultrasounds early and found out that Meagan’s brain was growing outside of the skull, a condition called encephaloceles.

“I was just shocked. I had never heard of it before,” Luellen said. “The doctor basically said, ‘It’s not good; the kids that are born with this condition usually do not survive, and it they do survive, their prognosis is very poor. Usually they are mentally and physically handicapped. Sometimes they don’t live very long. They could live to be a year old or just a few weeks old. They just have a world of problems.’ So he was really telling us, at that point, to consider terminating the pregnancy.”

Luellen said because she did not know a lot about the condition, when she left the doctor’s office she was in denial.

“I left there crying and not knowing what to do,” Luellen said.

Luellen and her husband, Scott, decided to maintain the pregnancy, despite the odds being against the baby’s survival.

“Through my pregnancy, I felt that I just had to give it a chance,” she said. “I couldn’t live with myself if I had terminated it.”

When Meagan was born, doctors told them that she had other health issues. She also has lissencephaly, a rare formation of the brain, making it smooth; and she has microsephaly, which means the main part of her brain is missing. The prognosis was not good.

“The doctors said kids with lissencephaly usually don’t live at all or are a vegetable when they are born,” Luellen said. “They have no control of their body, they have no thought processes, they can’t drink from a bottle, they can’t do anything.”

Right after Meagan was born at Lutheran General Hospital, her brain retracted into her skull, which Luellen was told usually does not happen. Meagan still had to have surgery immediately to close the opening in her skull, however.

The surgery went well, but an MRI of her brain showed that the upper portion of her brain had never developed. The doctor said that with so much of her brain missing, Meagan would never be able to hold her head up and never be able to cry, see, hear, taste, or smell; he said she’ll never have thought processes or know who she is or who her family is, Luellen said.

Luellen said doctors told her that Meagan would come home and be like a vegetable until she dies. The prognosis was that she didn’t have enough brain to support her bodily functions, and that everything would shut down, she would have trouble breathing or stop breathing, or her kidneys would fail.

Although Meagan seemed healthy and normal after her surgery, the doctor told the Seals that those other difficulties likely would begin soon.

“They told me it would probably be quick, like I would bring her home, she would live a week or two and then die,” Luellen said.

The Seals expected to be able to take Meagan home, with hospice care, on Nov. 18. However, on Nov. 16, Luellen’s birthday, the hospital called and told the Seals that Meagan had stopped breathing and was not responding to resuscitation efforts.

“That was the phone call we got. It was just devastating. I dropped the phone, I laid on the kitchen floor and just started bawling because I couldn’t believe what I was hearing.”

Scott picked up the phone and told the doctor they would leave right away for the hospital. The hour drive to Park Ridge, Ill., was agonizing for the couple, after what they had learned, Luellen said.

After a half hour of unsuccessful CPR, Meagan had been hooked up to a CPAP, to keep oxygen flowing into her lungs.

“They told us right then that Meagan was not going to make it,” Luellen said. “They said, ‘So, go home, get everything in a row and call a funeral home.’ We basically came home and called a few places, tried to figure out what we had to do to prepare for her to die.”

The Seals also called their church, Lord of Life, and asked Pastor Phil Ressler if he would baptize Meagan at the hospital. He arrived the following morning.

“I did the baptism right there in the hospital. Meagan had all the tubes on, and her mom was holding her,” Ressler said. “We all prayed for her.”

The hospital even supplied a baptismal gown.

“We took pictures, and right after she was baptized—I didn’t see this, but everybody else in the room did, the doctors, the nurses—they said she smiled really big,” Luellen said. “I was crying so hard I didn’t even notice.”

After the baptism, the family stayed with Meagan, waiting for her expected passing. The doctor removed the CPAP and put her on a little bit of oxygen to keep her comfortable.

“Within an hour, she opened her eyes, she was looking around,” Luellen said. “She was like a totally different baby than we’d seen days before. She was just different.”

Luellen said she believes it was truly a miracle, that having her baptized was what changed her.

“I really believe that. Because she wasn’t here to stay at that point, after having that long spell of not breathing,” Luellen said.

The Seals were able to take Meagan home the next day, under the understanding that, according to all the doctors there, she was still considered terminal.

“They told us she was probably going to live a week or two, and that was going to be it,” Luellen said. “They said, ‘Just love her and enjoy the time you have with her.’ So we prepared again, but more calmly at this point because we figured, she is here, we have time now, we can do things in a more orderly fashion instead of rushing through. And ever since that day, she’s just gotten better.”

At first, Meagan was on a feeding tube, and the Seals arranged for a hospice nurse to help them at home. However, Luellen said her baby daughter has not had any breathing difficulties, which were expected.

“It’s not like I’m doubting what the doctors told me. That’s what makes it so much more of a miracle,” Luellen said. “She was seen by 10 doctors, who all said the same thing about what to expect for Meagan.”

A couple of weeks after the Seals brought Meagan home, Luellen accidentally dislodged the baby’s feeding tube and called the nurse for help to reinsert it.

Luellen told the nurse that Meagan seemed much happier with the tube out of her throat. The nurse suggested that Luellen try giving Meagan a bottle and see what happened.

“So I did, and she was fine with it,” Luellen said.

The doctor told her to continue bottle-feeding as long as Meagan was not aspirating or choking.

“They say that in itself (being able to drink from a bottle), with her not having all of her brain, is just amazing,” Luellen said.

Luellen said she realizes that Meagan likely faces physical and mental challenges in the future, but she is glad her daughter has come as far as she has in just 2-1/2 months.

“She acts like a totally normal baby now, which is not supposed to be,” Luellen said.

Luellen took Meagan out of the house for the first time recently, going to the library with two of her other three children. When they got to the library, Meagan started crying loudly because she was hot from being bundled up for the outdoors. Luellen said she was thrilled to hear Meagan’s wail.

“It was the first time I heard her really, really cry. It was a good sign,” Luellen said. “She made me cry, because it was such a milestone for her.”
Luellen said she wakes up every day wondering what else Meagan will do.

“I know she is going to have setbacks and not make her (development) goals on time-rolling over, sucking her thumb or sitting up. But she is close to some of them, now,” Luellen said. “If I lay her on the floor, she can push herself up on her hands, and she wasn’t even supposed to be able to hold her own head up. So for her to get her chest off the ground, that’s huge. And it’s actually right on time for a two-month old.”

Meagan also recently began being able to roll to one side.

“There’s a lot of things that we hope for yet,” Luellen said.

Meagan has come a long way since her release from the hospital, when doctors said she likely would not survive more two weeks. Luellen said that the doctors no longer are giving the Seals a timeframe for the expected length of Meagan’s life.

“Now they are just saying, ‘It’s in God’s hands. It’s up to God how long she is going to be here,” Luellen said.

Photo: Baby Meagan was a little sleepy after her mother, Luellen Seals, had given her an afternoon bottle. When Meagan was born, she weighed 5 1/2 pounds but lost weight after surgery to close a gap in her skull. Against all odds, she has grown to a healthy weight of more than six pounds in less than two months.
Photo by Martha Quetsch