Legal and Medical Resources to Empower Cerebral Palsy Families

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Elizabeth’s Story

By Elizabeth’s mother, Lisa

I believe that God had a plan for us when he gave us Elizabeth, although it wasn’t always easy to accept, especially in the beginning.

We had tried to have a baby for three or four years. We were on fertility medicine when I finally got pregnant. I had just started my very first teaching job and I had to tell the principal! I had a really good pregnancy, very healthy, and a very good doctor.

Swelling and Pain

Two weeks before my due date I started to swell so she (the doctor) thought it would be good to induce. I went in Saturday morning at 7 a.m. They put some stuff around my lining to try to ripen it a bit. About 2 p.m. they gave me Pitocin, but by 5:30 p.m. I was in such severe pain they gave me Demerol. The pain got more and more severe; I had constant contractions with no break in between. They finally gave me an epidural. But nothing worked. The doctor finally sent everyone home late that night and said we’d try again in the morning.

Emergency C-Section

About 3 a.m. I couldn’t bear the pain anymore and asked them to call my husband. Nurses plopped the phone on my belly and said, ‘Call him!’ My husband got there, and then the doctor finally came in and said the baby’s not doing well. They did an emergency C-section. After she was born they held her up about 10 feet away so I could see her. She was completely blue and didn’t cry. She was limp. There was dead silence in the room. Then they put me out.

‘We Can’t Do Anything More For Your Baby’

When I woke up and asked about her, they said they were still running tests. That evening, our pediatrician, who was a friend, came in with tears in his eyes and said, ‘Lisa, we just can’t do any more for her here. We need to send her to Children’s Hospital.’ They had just wheeled her in and she looked pink and perfect. I said, “What are you talking about? What’s wrong?” But they wouldn’t tell me anything, other than that she was having seizures.

Seizures and Growing Concerns

When we took her home from the Children’s Hospital, they still weren’t telling us anything. We were still in the dark. I’m a very trusting person — or was. I believed everything they were saying. I didn’t think anything of it. We got her home and she was spitting up a lot. She had her first seizure at three months old. We took her to the emergency room. When we brought her back for a follow-up scan, the pediatrician noticed her head wasn’t growing normally. He said he had to report it because it’s a possible sign of child abuse. We were questioned by Children’s Services and everything!

Protecting the Hospital Against Misdiagnosis

We still had no idea what was wrong. She wasn’t hitting any milestones. She wasn’t sitting up or rolling over (she finally rolled over at 18 months). We finally asked her pediatrician for a referral to a developmental doctor, who told us she would need physical therapy and occupational therapy. We asked again, ‘Why, what is wrong?’

He explained to us that the hospital had diagnosed her with microcephaly and developmental delays, but what she actually had was cerebral palsy. He said the hospital used the microcephaly diagnosis because that protected the hospital against legal liability, since one case of cerebral palsy is medical malpractice.

Medical Records Locked Up

When Lizzy was 8 or 10 months old, one of my fellow teachers, who is older and wiser, suggested that I needed to compile all of Lizzy’s medical records. It took me months and months. They sent me to one place, and then another. Finally, a secretary confided in me that all of Lizzy’s records were under lock and key! Looking back, I thought, ‘No wonder’. When I suggested to my husband that we hire an attorney, we fought. He said the bible says we shouldn’t sue our brothers. But I argued that we didn’t know what the future held for Lizzy, just how much help she was going to need, or whether two schoolteachers could provide it. I contacted an attorney, who referred us to attorney Ken Suggs.

Our Attorneys Uncovered Terrible Mistakes

The saddest moment for me came when Ken told us that if Lizzy had been born anytime between when I came in at 7 a.m. and 10 p.m. that night, she would have been fine. The doctor had misread the fetal monitoring strips. She was a good doctor, but had made a mistake. The nurses had called her twice during the night and she hadn’t come in, even though she lived only two miles from the hospital.

We went to court in 2000 and finished in 2005. At trial, they tried to blame us for what happened. The doctor actually lied on the stand! Ken brought in a lot of experts, including doctors. It really made a difference. When our expert, an obstetrician, taught the jurors how to read a fetal monitoring strip — took them step-by-step through every hour, and it showed every sign that Lizzy was in trouble — it was a no-brainer. It’s not rocket science. The jury got it. They awarded us $3.8 million.

Lizzy Gets the Help She Needs

The process was hard and frustrating and created a lot of conflict with my husband. But now he thanks me. We never imagined we’d have such a severely handicapped child. At eight, Lizzy still wears diapers and gets her veggies through baby food. She drinks from a sippy cup. She’s visually impaired, and she still has seizures. But she started walking at seven — that day was incredible!

I used to spend so much time just trying to get us the resources we need to take care of Lizzy from the state, from Medicaid. As part of the legal process we had a life plan developed for Lizzy, to show us just how much we would need to pay for her therapy, her medicines, her care. Now, when we need something we can just buy it. We have a van she can step up into, rather than me lifting her. We’re moving into a new house that’s handicapped accessible and is equipped with a special therapy room.

Our Child Has Taught Us

Our prayer today is not that God will heal Elizabeth, but that he’ll do one thing to ease her pain. She can be cranky and sour, but overall she’s such a happy, sweet child. We collect ladybugs for her because they’re lucky. We call her our little ‘Bug.’

She’s taught us so much. First, that we don’t have control over much of our life. She’s taught us to be patient and unselfish. We have two other children now, Emily our five-year-old, loves to put her music on for Lizzy and bounce on her bed. She makes Lizzy feel so good. We also have a newborn, Jack.

Advice to Parents

My advice to parents who suspect a birth injury is to go see a developmental doctor to get some answers, and get help from an attorney, again to get answers, even if you don’t sue. Educate yourself about available resources. There’s a lot of help out there to help you meet your child’s needs. One of my best resources was the Internet, although I have to admit when I first read about microcephaly, I was horrified. So you have to take things with a grain of salt.

At first I blamed God (for Elizabeth’s condition), but I knew in my heart that wasn’t it. I knew I wasn’t being punished. It’s been a really good experience to have Elizabeth because we have met some really good people, although it’s taken me a while to start trusting people again.

Today, we just take it day by day, and often hour by hour. We try to make Lizzy as happy and comfortable as possible. We trust that God will take care of her, take care of all of us, and that we’ll all be okay.

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