As told by her mother, Donna
Tiara was born in September 1998, and has severe cerebral palsy.
I was seven months pregnant with my second child when I woke up one Saturday morning bleeding. I called the doctor and was told to go to the emergency room. I got there about 8:45 a.m. My husband was at work so he met me in the triage room; we were the only ones there.
I remember my husband kept going out to the nurses’ desk and asking questions. He was angry. Meanwhile, I trusted the doctors. ‘They know what they’re doing. Everything is going to be okay,’ I assured him.
It was 11:30 a.m. before I was taken to radiology for an ultrasound. I was bleeding so much nurses had to change the sheets once. I was left alone in radiology. I don’t know how long. I think I started to go into shock.
The on-call obstetrician finally ordered an emergency C-section. My baby girl was born at 1:52 p.m. She had to be resuscitated. She was flown to a hospital where she stayed in neonatal intensive care for 39 days.
My husband and I took shifts to be with her 12 hours a day. It was there that the doctors told me she had been brain injured and would develop cerebral palsy. I thought, ‘So she’s damaged some brain cells and would have impaired motor skills. We can handle this.’ I had no concept then what this meant.
Tiara could suckle some, but after two years doctors thought it best to put in a feeding tube. I kept thinking, ‘I’m dreaming. I can’t wait to wake up. You do everything right. You don’t drink or smoke. You eat right. Why is this happening?’
Family members started asking questions. I heard of someone who’d had an abruption and her baby was fine. People kept asking questions, so I talked with legal counsel and found someone to take the case.
As the result of filing the lawsuit, we found out a lot of things that we didn’t know. For instance, the doctor had ordered a fetal ultrasound ‘stat,’ but a nurse entered it as a routine order, so I didn’t get to radiology for two hours. My baby should have been on a fetal monitor while I was in radiology, but wasn’t. Even when they began monitoring and knew my baby’s heart rate was dangerously low, they didn’t notify a doctor. Finally, about 12:45 p.m. a doctor was told my baby was in trouble, and he ordered an emergency C-section. But the procedure didn’t happen for another hour. I know now that professional standards of care require that this be done within thirty minutes.
After all the information came out–the delays, the errors, going against standards of care–I was bitter at first. But eventually I put it in my heart to forgive. It’s not about the money (the case settled in 1999), but it helps a lot, because brain injury causes a lot of problems that you don’t know about early on.
Tiara is eight now. She is wheel-chair bound. We had a home built that can accommodate her needs. She has severe cerebral palsy. She doesn’t talk or walk, but she smiles a lot. She cries sometimes too. That’s the worst part, not knowing what’s what, or if she’s in pain. She has to have back surgery every six months to correct scoliosis, and has had hip and leg surgeries to keep her muscles loose.
She’s in a special needs school. She makes verbal sounds and she loves to be held. We spoil her. She enjoys her little brother, who’s four, and she’s all grins when she hears her older brother when he comes home from college. My whole family, including my husband, mother, sisters and brothers, help out. We make sure to include her in everything, to show her a lot of love and not to set her apart. We receive a lot of strength and peace of mind from the prayers of our church family. I believe we’ve also grown closer as a family and closer to God through this challenge.
For other parents in our position, I would say information is the key. You need to find out everything about what happened. I never would have known what went wrong, if I hadn’t sought counsel.
I don’t dwell on the past, but because we kept pursuing answers, Tiara now has a more comfortable future.