CYSTIC FIBROSIS
They told her she would never get this far
By JAN JARVIS
Star-Telegram Staff Writer
After giving birth to twin boys, Carol Shepherd had but one wish: to live long enough to see her sons turn 10.
She knew that it was a long shot.
Doctors told her that she would probably be dead within two years. But Shepherd, of Fort Worth, was determined to see her sons baptized. She got her wish and then some.
"The Lord blessed me with more than twice what I asked for," she said.
In May, when James and John graduate from Texas A&M University, Shepherd has every intention of being there. It is the latest in a long list of milestones -- including sending the boys off to elementary school, watching them get their driver's licenses and seeing them go to prom -- that Shepherd feared she would never witness.
At 5 years old she was diagnosed with cystic fibrosis, a chronic disease that affects the lungs and digestive system. Since then, Shepherd has lived from one challenge to the next.
Now 50, Shepherd recalls how when she was 9, her sister revealed that she wasn't supposed to live past 13.
But Shepherd has lived as if there were no deadline in sight.
She ignored doctors who told her that she would probably never get pregnant. When some people suggested that she end her pregnancy, she said it was out of the question. In 1985, she became the first U.S. woman with cystic fibrosis to give birth to twins.
Living to 50 is remarkable for someone with cystic fibrosis, said Dr. Bruce Marshall, vice president of clinical affairs for the Cystic Fibrosis Foundation, based in Maryland.
"It's even more remarkable for a woman with CF to get to watch her children grow up and graduate from college," Marshall said.
Defying the odds
When her twins were born, the survival rate wasn't very good for a woman with cystic fibrosis giving birth to one baby, let alone twins, said Robert Shepherd, Carol's husband of 26 years.
"One in four women didn't live long enough to see their child's second birthday," he said. "My take from that was the sheer exhaustion of motherhood was just too much."
Women with CF used to be told not to get pregnant because it was too physically hard for them, said Dr. James Cunningham, Cook Children's Medical Center's medical director of pulmonology and co-director of the Fort Worth Cystic Fibrosis Center.
"Now many women with CF have very healthy pregnancies and deliver healthy babies," he said.
'Treasuring every day'
The discovery of the CF gene in 1989 led to treatment advances and improved the quality of life, Cunningham said. Today, the median age of survival is 37.
Carol Shepherd did everything she could to make sure that she would be around. When her children were infants, she worked in breathing treatments and medications between diaper changes and feedings. Their home in east Fort Worth often became a makeshift hospital, with IVs and medical equipment.
The couple attend Lamar Baptist Church in Arlington and relied on their faith to help them get through every medical ordeal. Family and friends also helped.
The Shepherds learned to cope with frequent hospitalizations. Over the years, Robert Shepherd, who works at Bell Helicopter in Hurst, often hurried home to give his wife a break from parenting tasks.
The boys knew that their mom went to the hospital a lot more often than other moms, but "we didn't really grasp the concept that mom was sick," said John Shepherd, who attended Dunbar Magnet High School in Fort Worth with his twin.
When she was hospitalized at Cook, which cares for all area CF patients because most tend to be young, the boys could play video games in the playroom, Robert Shepherd said.
"I can remember thinking the hospital was a new and exciting place to explore," John Shepherd said.
When the boys started college, they began to realize just how amazing their mother was.
"I did research about CF, and I could see how much of a miracle it is that she is still alive," said John Shepherd, who, like his brother, is majoring in engineering.
Carol Shepherd hopes for a cure but said, "I'm just trying to go on living and treasuring every day." She volunteers with the Cystic Fibrosis Foundation and offers hope to the families of children with the disease.
"Now I'm thinking about weddings and really hoping to be a grandmother," she said.
By the numbers
30,000: Number of people who have cystic fibrosis nationwide
1,362: Number in Texas
70: Percentage of people diagnosed by age 2
40: Percentage of the CF patient population age 18 or older
37: Median age of survival in 2006
5: Median age of survival in the 1960s
Source: Cystic Fibrosis Foundation
They told her she would never get this far
What happen to all the gifts and the Christmas Tree?
Friday, December 28, 2007
On Thursday I started taking down all the Christmas decorations and Tree. Melissa watched me take all the ornaments off the tree. Right before her morning nap I put her down on the floor and off she went rolling over to the tree. She wanted it so bad. When she woke up from her nap it was gone. She couldn't figure out where it went? Next year is going to be hard keeping her away from the tree.
Melissa's 1st Christmas
Thursday, December 27, 2007
What a Christmas we had this year. Melissa's 1st Christmas was awesome! She got so much this year that I don't know what we are going to do next year. Our Christmas started off with Grandma DD coming to town on Saturday night. She got to see Melissa before she went to bed.
Sunday our dear friends Sharon and Sara from Levelland Texas came to see Melissa. I have know Sharon and Sara for years. Sara is like my little sister that I never had. So we are calling them Grandma Sharon and Aunt Sara. Sunday night we went to visit Aunt Laura and our Cousins Jana and Jamie. We celebrate Christmas with them. When we got home we let Melissa open up a gift that DD gave her. Melissa got a new bath seat.
On Monday, Christmas Eve we made cookies for Santa and even had Santa drop by to wish Melissa a Merry Christmas. Melissa never got to see Santa this year because of all the germs at the mall, so he made a special trip just for her.
Melissa woke all of us up around 7:00am on Christmas morning so we started our day off early, we feed her and then let her open all her gifts. That took about and hour just because we wanted to enjoy this special time with her. When the fun was over with, it was nap time. That afternoon we went and had an early dinner with Paul's sister and family. Melissa got to open more gifts. She even set a new record for her, she slept in her pack n play for over and hour. I guess she was tired from opening up all her gifts.
Paul, Grandma DD and I enjoyed this special time with Melissa. We got to celebrate Jesus' Birthday and Melissa 1st Christmas. We started some new family traditions this year.
We hope your family had a great Christmas and we wish you a Happy New Year
Hanging out with my friend Kaelyn
On Friday, December 21, 2007 I went to visit my friend Kaelyn and we had a great time. Kaelyn and I played together and did our baby talk. I wanted to crawl with Kaelyn so bad, but I just don't know what to do. Not much longer and I will be crawling with Kaelyn.
Do I look like my Mom?
Here is a picture of my mom when she was 6 1/2 months old. Do I look like her? My mom thinks we have the same smile and of course we have the same eyes.
Christmas Gathering with Friends
Paul, Melissa and I met up with some of our dearest friends for our 7th annual Christmas Gathering. When we started this Christmas Gathering it was just the girls. The next year we added the husbands and two kids to the gathering. Now it has grown with lots of kids. We have Karl who is 14, Jakob who is 5, Javier who is 3 1/2, Luisa who is 3, Cole who will be 3 in February, Talon who will be 3 in March, Luke who is 1, Melissa who is 6 months and Mia who is 4 months. Our friends Tina and Landon are excepting there second child in late February early March. It's going to be a girl! We are happy it's a girl. For the longest time it was Luisa and the boys.
Melissa's 6 month Check up
Wednesday, December 19, 2007
Yesterday I took Melissa in to see her doctor because she is coughing and has a stuffy nose. While we where there went on and had her 6 month check up. Melissa doesn't have a cold, ear infection or anything else wrong. The doctor thinks its from the heater. He did say her lungs sound good and to watch her cough, if it continues for the next week to call him.
As for her 6 month check up Melissa is weighing 17lbs 14 oz (90%) and in height she is 25 1/2 inches (50-75%) her head measured 42cm (25-50%).
Melissa is right on track with her development. The doctor did say to start baby proofing before she starts crawling.
Melissa is 6 months old!
Monday, December 17, 2007
Our baby girl is 6 months old today! Wow we have made it half way through her first year. Every month gets better and better. As you know from reading the blog Melissa is on the move by rolling all over the place and sitting up on her own. She is eating solids and loves sweet potatoes, squash and carrots. She isn't a big fan of rice cereal and peas! We plan on starting her on fruit soon!
Melissa has a pretty smile that melts your heart! We look forward too the next 6 months! We love you Melissa and can't wait for your first Christmas in a week!
Melissa has her 6 month check up on Thursday, more shots! We can't wait to find out how much she weighs and how long she is! I will up date the blog on Thursday!
I took Melissa for her 6 month pictures this past week. These are also her Christmas pictures.
Sitting up on my own!
Thursday, December 13, 2007
I'm a busy girl, I'm learning how to roll all over the place and now I'm learning how to sit on my own. My mom has been working with me and it seem to be helping. She said I'm becoming a big girl. I'll be 6 months old on Monday! Check out my pictures and video of me sitting on my own. Don't I look cute in my overalls?
Watch the video
Busted!
Wednesday, December 12, 2007
I busted Melissa last night and tonight getting into things. Since she has mastered the rolling around she is ending up at the TV and Christmas Tree. Tonight she found her presents and thought she needed to eat the paper. You can see that the present was moved, she did that on her own! What are we going to do next year?
Tuesday Night
Tonight
Hanging out with friends
Saturday, December , 2007
Yesterday Melissa had two friends over. Kelsey and Everly came over to visit us. Kelsey is still to little to play with but it was good to see her and her mom Kimber. Everly is 4 months older and is trying to walk. Melissa and Everly had fun talking baby talk to each other.
Spurs Update
Mommy told me that the Spurs won 97-95 and it was a good game. I wish I could have stayed up and watched it. Daddy said when I get older he wants to take me to the game. I can't wait!
GO SPURS GO!
Wednesday night
Tonight the San Antonio Spurs play the Dallas Mavericks. If you don't know my daddy is a big Spurs fan so I am one also. I put on my Cheerleading outfit and daddy put on his Tim Duncan jersey. I only get to watch 30 minutes of the game because I have to go to bed. I hope the Spurs bet the Mavs tonight. Mommy will tell me in the morning who won! Check us out!
Melissa on the move
Wednesday, December 5, 2007
Melissa has been learning how to roll over since she was 3 months. She could only go from tummy to back and then was stuck. Right after Thanksgiving she thought it was time to started rolling from back to tummy and then tummy to back. She has been getting better at it everyday. I finally caught it on video where it didn't take over 4 minutes to roll around.
Last night she made her way to the entertainment center and got into the DVDs we had sitting out. It's getting time for us to baby proof our apartment.
Getting Spoiled by Grammy
My Grammy was in town for Thanksgiving and stayed until this past Sunday. Grammy is my dads mom. She came over a couple of times to see me. I won't get to see Grammy at Christmas, so we took a picture in front of our Christmas Tree.
