Sophia's Story

 

 Sophie was born on Sept. 28, 1999. We found out 2 days later that she had suffered a prenatal stroke. When I heard the term "prenatal stroke" it shattered my dreams of a healthy baby. For 9 months my husband and I had said "I don't care if it's a boy or a girl, just so it's healthy". Now 2 years later I have different priorities. 

First of all, let me tell you that Sophie has hit every developmental milestone, early. Our daughter walked at 10 months. Now, she's 2 and can run, kicking a soccer ball the length of the soccer field. She is combining 4 words to make short sentences. She dances like crazy while she belts out Barney songs. Everyday with her is like a gift. I watch her in awe. But, I have never stopped worrying. 

My pregnancy with Sophie had been difficult. I have severe asthma. My first pregnancy with my son, Ethan I was able to control my asthma naturally. But with Sophie, I had to take medication. I tried to meditate, stay away from my asthma triggers, and rest. But in the end the baby wasn't getting enough oxygen. I had no choice but to take meds. At first, it was just inhaled Albuteral for an occasional attack. But by my eighth month, I had to start taking Predisone, a steroid. The biggest risk with Predisone, from my understanding, was the baby growing too big too fast. They use Predisone to treat asthma, and a lot of other diseases. But doctors also give it to pregnant women, who have a high risk of delivering premature, because it can increase birth weight. 

If there's one thing I didn't need help with, it was growing big babies. Ethan had been 8 pounds 13 ounces, and Sophie looked big on the ultrasound before I started taking the Predisone. So the doctor watched her size closely for the last weeks. He did a lot of ultrasounds. And finally on my due date, he induced labor, so that she wouldn't get any bigger. They hooked me up to Pitocin, a drug used to induce labor, and all my family and friends gathered around. But Sophie had other ideas. They sent me home after hours of no progress. 

The next day I took a non-stress test. There was something wrong. Sophie wasn't moving very much. The doctor told me to relax. He said she might just be running out of room in there. He ordered an extensive ultrasound. It showed that everything was fine. They waited another day before trying to induce labor again. This time it worked.

  It took a long time, but finally hours later, my water broke and I started to progress quickly. However, I never did dialate past 9 cm. I was stuck there for hours, and got the urge to push. The nurses gave me the ok to start pushing. With my son I had delivered him naturally, through a swollen cervix, which never dilated past 9. He was born with a broken collarbone due to the tight squeeze. Now with Sophie, I was scared that she might be bigger. I kept pushing. But, after over an hour of pushing, the pain became unbearable. I knew my baby was in danger. I shouted to the nurses "get the doctor something's wrong". They didn't listen. They told me that I needed to be stronger. They said things like you can do it, and keep trying. I said "I know something's wrong, I've been through delivery before, GET THE DOCTOR! My husband, Chuck and my mom were both in the room. I pleaded with them. After awhile one of the younger nurses snuck out and got my doctor. When he came in he rushed me out for an emergency cesarean section.  

Sophie was born shortly after. Her apgar scores were good. Her heart sounded fine. She weighed 9 pounds 9 oz. We were elated! 

It wasn't until a few hours later that the seizures started. I was groggy, my mom, and mother-in-law noticed them first. Her right arm was twitching rhythmically, up and down, up and down. They got the nurse, who called our pediatrician. They took Sophie away from me, and put her back in the nursery for the doctor to examine her. Shortly after that, The Dr. came back, without Sophie, and explained that she was having seizures. They wanted to transfer her to a better-equipped hospital, with a neonatal unit. After having the C-section, I couldn't go with her. I couldn't even walk down the hall to see her. The next time I saw her was when the EMT transporters brought her to my room in an isolete to say goodbye.

 She went to the other hospital by ambulance. In the first 24 hours, she had about 10 seizures altogether. Her Dad never left her side. Chuck listened to everything the doctors were saying, and called me with updates. I worked hard to get out of my bed and walk. They discharged me about 24 hours later. I went to see my baby as fast as I could. Her seizures had almost stopped due to a load does of Phenobarbital. The neonatal intensive care unit doctors had called in a neonatal neurologist. Sophie had an EEG and a CT scan. From the CT scan, the neurologist determined that she had suffered a stroke it had damaged the left frontal lobe, but hadn't touched the severe frontal, and hadn't crossed the midline. From the EEG they determined the seizures were coming from the damaged part of her brain. Sophie had a few more seizures after the Phenobarbital dose, and then they stopped. All seizures were her right arm, and sometimes, right leg moving rhythmically up and down. A few times her face twitched also. The seizures never lasted more than a couple of minutes. Sometimes only a few seconds. However, 2 days after she was born, she was stable without any seizures. She was nursing well, and had never stopped breathing. All blood work had come back in the normal range.  They discharged her when she was 4 days old. She was on a maintenance dose of 5mg of Phenobarbital. Her Phenobarbital levels would be checked every 2 wks.

 Seven days later, when she was 11 days old, we were driving in the car, and she had another seizure. It was horrific. The seizure involved all four limbs, and lasted 17 minutes. We called her pediatrician on the cell phone and drove straight to the emergency room. They admitted her. They did another CT scan, to check for new damage. They found nothing. They gave her more Phenobarbitals, raised her maintenance dose, and kept her overnight. She was miserable. She was used to sleeping in a bassinet next to Mommy and Daddy now. And she was used to being cuddled, held, and nursed. Now she was hooked up to tubes and wires, in an isolete. The next day we told the doctors that we wanted her home. They disagreed; they wanted to keep her for observation. We took her home that afternoon. She had another seizure on the way home from the hospital. Again, this one lasted exactly 17 min., and involved all four limbs. We watched her, helpless, and drove home. The seizure stopped every time we stopped the car, and stopped for good when we pulled in the driveway. She was 12 days old, and hasn't had a seizure since then. We asked for an apnea monitor the next day. That thing drove me nuts with false alarms at 3 am. But I was thrilled to have it. It gave us some peace of mind. 

Sophie's first year was a whirlwind. She surprised us every day by progressing so quickly. We had a physical therapist, through the state, which came out to our house and checked her development. Sophie did everything on every list for her age, and more. Soon, the therapist started dropping her visits down from every 2 wks, to every month, to quarterly, until they discharged her from the program. There was no need for her to come out. Sophie didn't have a fever for the whole first year, let alone anything serious. A lot of people prayed for her.  We massaged her and read to her everyday. We played Handle's "Water Music" for her. We tried reflexology. I took a DHA Omega 3 fatty acid supplement everyday, along with a ton of vitamins, and breastfed her exclusively. She went to regular checkups at the neurologist, and pediatrician.

 When Sophie began to walk, at the age of 10 months, I couldn't stop crying, it was amazing. Then, we noticed that she was holding her right arm stiff, as she toddled along. We were scared. But, within a few days, the arm dropped down naturally. This same thing happened when she was 18 months old, and really began climbing stairs, and running. She held that arm at a right angle, as stiff as could be for a week, only while running, and climbing. Then it dropped.

 When Sophie had her first birthday, everything seemed perfect. Except, we still didn't know why she had the first stroke. Was it due to the meds I took when I was pregnant? Or was there something else. I had tremendous guilt, and continued asking the neurologist the same questions: Why did it happen, and what's the chance of it happening again? She continued to tell me that we might never know. When Sophie went for her one-year checkup, I went with a list of diseases that I had researched on the Internet.  The list included Factor V Leaden, and Maya Maya among others.  I demanded that the neurologist test her for these things. She gave pretty valid reasons for why she had skipped these tests, but agreed to order them. They shipped her blood an hour away to Chicago for DNA testing. 

Everything came back okay. Until, the Factor V Leiden test came back positive on Halloween. I looked at my 2 little trick or treaters through teary eyes all night. Now we knew, a reoccurrence was possible. Not only did Sophie have Factor V, but we knew that if she had it, Ethan had a 50/50 chance of having it too. And, one parent definitely had to have it. The rest of us got tested.  Late November, 2 days before a well needed vacation, the call came. Chuck and Ethan tested positive.

 We made the decision to find a new neurologist, and a hematologist that would work together. That's when we ended up in Indianapolis. They concluded that no treatment was necessary at the time. They wanted to see her back once a year. But, they recommended that we see a pediatric cardiologist also. We made the appointment for the cardiologist for a few months down the road, and drove home.

 In-between the 2 scheduled visits to the hospital; Sophie fell down while she was dancing. The strange part was, she couldn't get back up. She didn't cry, or act like she had gotten hurt. But, every time she tried to stand, her right leg would buckle under her. This made her laugh. We waited a couple of minutes, and then rushed her to the emergency room. The "signs of stroke" were burned into my memory; it was hard not to panic. They sent us home when after a couple of hours she started to limp around. They did an X ray, and said it was probably a twisted ankle. I called the neurologist the next morning just in case. He said that we need to do a CT scan, and an MRI right away. We drove 2 hours, scared to death. Was it a twisted ankle, or a mini-stroke (TIA)? When we got there, they sedated her. When the MRI was over, we checked into a hotel, and waited for the results. An hour or so after we checked in, she had a reaction to the sedative. As it began to wear off, she got uncontrollable. Sophie is usually calm, now she was kicking and screaming in a dreamlike state. The nurses said it shouldn't last long. Try over 3 hours of crying in a small hotel room, while you are waiting for results like this. The word anxiety doesn't cover it.

 The next day, while still waiting for the results of the MRI (on a Friday afternoon, of course) we stopped in to see the cardiologist. He squeezed us in, since we were down there. He ordered an EKG, and an Ultrasound of her heart. The EKG looked good. However, the ultrasound showed a hole in her heart. The cardiologist discussed the possibility of surgery, to close the hole. He said this would only be necessary if, she had indeed suffered another stroke, or TIA. So we sat in a waiting room, with 2 tired, hungry kids, one who had been through a battery of tests, and waited. We waited to see if our dancing toddler had twisted her ankle, or suffered another stroke, and needed heart surgery. It was a twisted ankle. We drove home relieved, but now thinking about the hole in her heart. That was over 6 months ago.

 Since then, we've had a great summer, and celebrated Sophie's 2nd birthday.  Sophie is a strong, independent person, who has changed our lives more than imaginable. Her smile could bring a tear to my eye at any given moment. We still go to a rehab center quarterly to check her development. We will make yearly trips, a couple of hours away, to a children's hospital, in Indianapolis for checkups. And, of course our pediatrician keeps a close eye on her. He's the one that saw her first seizure when she was just a few hours old. She is running and talking and climbing. Sophie loves Barney and Horses. Only God knows what the future holds for Sophie, and all of us for that matter. But, what I know is that God has blessed us with two wonderful children. Chuck and I never take a day for granted. If normal problems arise in our life, like needing a new carburetor, it seems insignificant. Sophie has made us realize what's important. Thank you for taking the time to read about our daughter.

 May God bless all of you strong kids out there who have SURVIVED strokes, and they're families too!
                                       The Scates Family...Alison, Chuck, Ethan, and Sophia
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None of the stories or pictures on these pages may be used without the express written permission of the Pediatric Stroke Network and/or the parents of these children. These stories are copyrighted by the intellectual property law. All stories are original submissions written by parents.
 
 

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