God is a God of life. A baby born four years ago has proved that with her life of continual miracles.
Four-year-old Issabella Faith Montague could be heard above the other children at C2 Church’s Vacation Bible School program this year. The reason she sang so loud, was easy for her to explain, “I want people to hear ‘Jesus loves me.’”
The message is simple but profound delivered from a little girl whom doctors continually suggested her mother abort.
At 22 weeks into her pregnancy during a routine ultrasound, doctors gave Rachel Montague some devastating news. They told her the baby had Dandy-Walker Malformation (DWM). They told her it was likely the baby would be born dead. They added if the infant were born alive she would most likely be blind, deaf, mentally retarded and have cerebral palsy.
It is difficult to understand what DWM is exactly. According to the National Organization for Rare Disorders, DWM is characterized “by underdevelopment of the middle part of the cerebellum known as the cerebellar vermis, cystic enlargement of the 4th ventricle (of the brain) and enlargement of the base of the skull.” It occurs in about one in every 30,000 live births.
Searching the internet Rachel learned more about DWM. Although she found several families whose children made it to their teen years, many others’ children hadn’t made it past 18 months.
The story that had the most impact on her, though, was that of a mother who had been told her unborn child had DWM. The mother chose to terminate the pregnancy but had an autopsy done. The autopsy showed the baby did not have DWM.
“That clenched it for me,” she said. “I had always been against abortion. I don’t believe in murder. I decided that no matter what I would go through with the pregnancy. I wanted the baby.”
In the meantime, Kim Weger and Mary Simonson, who are Rachel’s mother and grandmother, put Rachel and her unborn baby on every church prayer chain available including their churches, C2 Church in Columbia, MO, and Reinmiller Independent Baptist Church in Joplin, MO. Mary even put them on the Billy Graham Evangelistic Association prayer chain.
“It was a tough time for everyone,” Kim, a special education teacher, said. “It was a reality check for me.
“I began to ask myself, what do I really believe about a baby coming into our family? If she is born with a disability how are we going to come together to take care of her?
“It made me be real about my feelings, attitudes and behavior. Of course, the answer was I would do everything possible to love and protect my daughter and her baby.”
Rachel admits that she was emotionally and physically devastated after the news that she might carry the baby only to have it die at birth or shortly after.
“At that point I hadn’t really thought much about what God wanted or what His plan might be for my child’s life,” she said. “I knew I wanted the baby but I was very numb about the possibility that she might not live.”
It was at 26 weeks that Rachel told the specialist her decision. He asked what she wanted. She said she wanted her baby to be born, to be healthy and to live.
He told her that he would pray that God would bring her a healthy baby. “It seemed everyone was praying for something in regard to my baby,” she said.
Throughout her pregnancy, doctors did ultrasounds. At each ultrasound they continued to ask if she was sure in her decision not to have the abortion.
Closer to the time of her delivery they told her the DWM was getting smaller where in most babies it got larger. “It had shrunk from about the size of a half dollar to more like a nickel-size,” she said.
Rachel and Kim say it was really Mary Simonson, Rachel’s grandmother and Kim’s mom who kept everyone together. “Rachel seemed so calm before the c-section,” Kim said. “I asked her why she wasn’t more emotional.
“She said, ‘GiGi told me I needed to be at peace with whatever God’s will was for my baby.’ That helped me to calm down as well because I knew God was in control whatever the outcome.”
Mary remembers the discussion because Rachel had decided that she wasn’t going to buy anything to bring the baby home in because she felt the baby would die anyway.
“I told her, ‘God has given us this baby. It doesn’t matter if she has a disability or if she doesn’t or if she lives or doesn’t, she is a gift from God. We will love her. We need to trust Him and have peace.’”
In August 2008, Issabella was born with a 9 out of 10 Apgar score which indicates a healthy baby. She weighed 6 pounds, 7.9 ounces.
“I didn’t know until later that there had been an entire team outfitted and ready to life-flight her to Cardinal Glennon Hospital,” she said. “They were sure she would have multiple severe defects. They wanted to be ready.”
Rachel had a caesarean section because Issabella’s heart rate had dropped prior to birth. “It had been a long labor and I hadn’t dilated so they just thought the baby was overly tired,” Rachel said. “However, at birth her heart and oxygen levels were all perfect.”
Kim said, “The OB doctor told me, ‘She’s perfect’ when she placed her in my arms. I said, ‘Perfect like a grandma sees her or like a doctor sees her?’ She said, ‘Like a grandma and a doctor see her.’ So far as we can find, there are no health problems with her.”
While she was in the hospital, Rachel nursed the baby but Issabella continued to lose weight. With formula supplementation she started gaining weight but still left the hospital a little over 5 lbs.
At her two week checkup, Issabella was down to 4 lbs. and her pediatrician heard a heart murmur. “Although a lot of babies have heart murmurs, she was concerned because a lot of DWM babies have heart failure,” Rachel said.
At University Hospital in Columbia, tiny Issabella was strapped to all sorts of wires to do scans on her heart. Kim couldn’t go to the appointment which resulted in the trip to the hospital.
“The heart doctor had apparently told her that the baby had heart failure,” she said. “When she asked what that meant, he said, ‘It means your baby is going to die.’”
The specifics of the kind of heart failure Issabella had were two-fold, she had two holes in her heart and the valve in her left heart ventricle was backwards.
“It was hard because it seemed like another death sentence had just been pronounced over my baby,” she said.
They set up an appointment at Cardinal Glennon Children’s Hospital in St. Louis. In September, Kim, Rachel and Mary took Issabella to St. Louis where more scans were done.
The doctor explained Issabella’s heart condition could put her in failure to thrive. She would need open heart surgery but he wanted to try to wait until she was a year old.
“He said if they did it before then she might die because her heart was too small operate on successfully,” Rachel said. “The doctor would have to be extremely skilled for her to survive.”
They sent her home with a heart monitor that Issabella had to wear all the time except when she was being held. It would beep if Issabella moved. If her heart stopped it would squeal. He also sent her with a special supplemental feeding tube that essentially dripped formula into her.
Over the next few weeks, several times her heart did stop. The family had been able to revive her, however, she seemed to be getting worse.
“I had been taking care of Issabella one day,” Mary said. “I got really worried about her because she was sleeping way too much and it seemed like it was a deeper and deeper sleep.
“I tried to wake her up and was trying to drop formula in her mouth but she wasn’t taking it. She was like a rag doll. You could move her any which way and she wouldn’t move except her eyeballs. I told Kim we have to call the doctor. I just can’t get her to wake up.”
Kim got in touch with the doctor in St. Louis who told them they needed to bring her in morning as soon as they could.
During the trip to the hospital and the surgery, Rachel admits she was devoid of emotion. “I felt I might be burying my baby the next day,” she said. “I was horribly depressed. I had shut down. I can’t tell you anything about the surgery or after the surgery.”
Issabella had open heart surgery. She had two quarter-sized holes in her heart. Originally they had thought the holes were much smaller. The surgeon repaired the holes.
“That was a miracle, but the bigger miracle is that when they went in to open her heart, the valve was perfect,” Rachel said. “He said he could only attribute it to a miracle. He says it clearly showed in every scan that the valve was backwards.”
Rachel attributes the miracles to the prayers of people all over the world. Mary has a friend who is a missionary in Haiti. “The people she ministers to in Haiti prayed over a handkerchief and sent it to Issabella,” Rachel said. “They believed the prayers would travel with the handkerchief. That went with Issabella into surgery in addition to a guardian angel pendant my mother found on the ground when they had car trouble on the way to take Issabella to the hospital.”
Kim says she feels God let her find the guardian angel pendant to remind her He was watching out for Issabella. “I was freaking out because we had car issues and we needed to get her to hospital,” she said. “God was letting me know He had it all under control.”
Issabella qualified for First Steps, a preschool program for babies and toddlers with disabilities, and for the Early Childhood Learning Program through Columbia Public Schools. Now in North Callaway School District, she attends the preschool program and receives speech, physical and occupational therapy.
“Sometimes its not easy being Issabella’s mother,” Rachel said. “She is fragile and delicate. Her doctor says because she had failure to thrive and her heart was bad, her immune system never got the chance to be strong. Every time she gets sick she doesn’t have the power to rejuvenate herself.”
She has had febrile seizures which happen when her fever goes above 102. “So far she’s only had two but she gets a blank or glassy-eyed stare. She either shakes uncontrollably or doesn’t respond when you talk to her. Both of those times we had to get her to the hospital where they put in an IV.
“We try to head it off before it gets too high by putting her in a cool bath, giving her pediatric Tylenol or ibuprofen and running a fan. I’m always in fear of another seizure.”
She is still small for her age. At 22 lbs, her sister who is 17 months younger already weighs more.
Despite her difficulties and the rough beginning, Issabella is an independent, spunky, energetic, creative, intelligent little girl who is very caring, empathetic and motherly.
Rachel doesn’t question God about her daughter’s medical problems. She understands that there is no character developed when individuals ignore God and their lives have no difficulties.
“I was in a situation in my life where God was nothing to me,” she said. “Without Issabella having her medical issues, goodness only knows where I would be. I would have never started going back to church. I would still not care about God. I would never believe He cares enough about me that He would deliver miracles in my life.”
Mary adds, “All of us need to grow and learn to trust God for everything. We don’t learn anything by having everything handed to us. It draws us closer to Him when we have to learn on Him.”
Today Rachel says she seeks after God and what His plan is for her, Issabella and her other children. “We have prayed many times about where we are going with her, what we want for her and if we are doing the correct things for her and with her.”
Rachel and her family know they are blessed every day that they have Issabella. “According to many different doctors she was not supposed to be alive,” she said. “She is only here because of lots of miracles. God moved the hands of the surgeons and she survived. Because of God, she is alive today.”
Mary and Kim add that it is easy to see Jesus’ love in Issabella. “She just loves life,” Mary said. “Even at four years old she knows that God gave her life.”