Elburn family’s baby beats odds of survival
by Martha Quetsch
ELBURNâ€”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.
â€œI was just shocked. I had never heard of it before,â€ Luellen said. â€œThe 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.â€
Luellen said because she did not know a lot about the condition, when she left the doctor’s office she was in denial.
â€œI left there crying and not knowing what to do,â€ Luellen said.
Luellen and her husband, Scott, decided to maintain the pregnancy, despite the odds being against the baby’s survival.
â€œThrough my pregnancy, I felt that I just had to give it a chance,â€ she said. â€œI couldn’t live with myself if I had terminated it.â€
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.
â€œThe doctors said kids with lissencephaly usually don’t live at all or are a vegetable when they are born,â€ Luellen said. â€œThey have no control of their body, they have no thought processes, they can’t drink from a bottle, they can’t do anything.â€
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.
â€œThey told me it would probably be quick, like I would bring her home, she would live a week or two and then die,â€ 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.
â€œThat 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.â€
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.
â€œThey told us right then that Meagan was not going to make it,â€ Luellen said. â€œThey 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.â€
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.
â€œI did the baptism right there in the hospital. Meagan had all the tubes on, and her mom was holding her,â€ Ressler said. â€œWe all prayed for her.â€
The hospital even supplied a baptismal gown.
â€œWe took pictures, and right after she was baptizedâ€”I didn’t see this, but everybody else in the room did, the doctors, the nursesâ€”they said she smiled really big,â€ Luellen said. â€œI was crying so hard I didn’t even notice.â€
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.
â€œWithin an hour, she opened her eyes, she was looking around,â€ Luellen said. â€œShe was like a totally different baby than we’d seen days before. She was just different.â€
Luellen said she believes it was truly a miracle, that having her baptized was what changed her.
â€œI really believe that. Because she wasn’t here to stay at that point, after having that long spell of not breathing,â€ 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.
â€œThey told us she was probably going to live a week or two, and that was going to be it,â€ Luellen said. â€œThey 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.â€
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.
â€œIt’s not like I’m doubting what the doctors told me. That’s what makes it so much more of a miracle,â€ Luellen said. â€œShe was seen by 10 doctors, who all said the same thing about what to expect for Meagan.â€
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.
â€œSo I did, and she was fine with it,â€ Luellen said.
The doctor told her to continue bottle-feeding as long as Meagan was not aspirating or choking.
â€œThey say that in itself (being able to drink from a bottle), with her not having all of her brain, is just amazing,â€ 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.
â€œShe acts like a totally normal baby now, which is not supposed to be,â€ 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.
â€œIt was the first time I heard her really, really cry. It was a good sign,â€ Luellen said. â€œShe made me cry, because it was such a milestone for her.â€
Luellen said she wakes up every day wondering what else Meagan will do.
â€œI 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,â€ Luellen said. â€œIf 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.â€
Meagan also recently began being able to roll to one side.
â€œThere’s a lot of things that we hope for yet,â€ 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.
â€œNow they are just saying, ‘It’s in God’s hands. It’s up to God how long she is going to be here,â€ 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