Category Archives: Stories

Justice for Jordan: A Mother’s Story



By: Nicole Carter
I’m now a single mom with three kids. Jordan is my youngest. I gave birth to Jordan in a Tennessee hospital in 2005, and that day changed my life. Since I have diabetes, I was going to a specialty clinic for high-risk mothers and having the non-stress test done twice a week. When Jordan’s test at 38 weeks showed he wasn’t moving in response to the buzzer (acoustic stimulator), they put me in a wheelchair and took me to the hospital for delivery.

That was between 10 and 11 a.m. I lay around waiting. I just tried to stay calm, for the baby’s sake. My husband and mother were with me, and they tried to stay calm too, to keep me from getting all stressed out. I’m not the kind of person to make a scene. But inside we were all worried.

The plan was to do the delivery before 3:30 p.m., even though my baby was in danger. The excuse they gave was that because I had eaten breakfast, they wanted to wait six hours from when I had eaten. However, they didn’t even deliver my baby at 3:30 p.m. They missed their own deadline and didn’t deliver him until 4:49 p.m.

Getting Answers for Jordan

I ended up having a C-section. They put me under to do it, so I wasn’t awake when Jordan was born. But I learned later it took doctor’s 30 minutes to revive him. By the time I got to see him he was in the NICU and covered in tubes. He had an IV in his forehead, a tube in his nose. They had to massage his stomach to make him urinate. He didn’t function at all. When the doctor came in to see me after the delivery, he told me that Jordan was fine, but that he may have some issues in the future, they just couldn’t tell. When he was three weeks old, they told me because he had water between his skull and his brain, he was probably going to have cerebral palsy. I knew something wasn’t right. We kept asking, but nobody could give us any answers. They were all so vague. Probably because they knew I was angry and thinking about filing a lawsuit.

Finding a Lawyer Wasn’t Easy

First I talked to some local lawyers, but nobody was willing to take the case. One female lawyer I talked to twice on the phone asked me to meet with her. But when I walked into her office, she asked me who I was. Really? Obviously, I didn’t hire her. Then I contacted a law firm in Chicago who said we had a case. A month later we got a letter from them saying they were not going to take the case and that we should stop looking for a lawyer. So I started looking at lawyers far away. I found Janet, Jenner & Suggs. They had a track record of taking cases like mine and winning – cases other people said weren’t winnable. Eight years later we had a jury verdict for $33 million.

Coming to Terms: “I Wasn’t at Fault”

Howard Janet was lead trial attorney. Sitting in the courtroom hearing the evidence he was putting on made it clear to me that I hadn’t done anything wrong – that nothing I could’ve done would have changed the situation. I wasn’t a doctor. I wasn’t at fault. I’d been carrying a load of guilt around for years that maybe there was something I could have done to prevent what happened. I felt like a huge burden had left me. When I heard the verdict, I was overwhelmed and confused. You try and try and think you’re never going to get there, and suddenly you are.

Jordan’s Challenges

Jordan has braces on his legs and uses a wheelchair and a walker to get around. He can’t talk, but we can understand him. He’s developmentally delayed, but he’s already really good at using a touch screen to communicate and play games. I used to sell insurance and work 40 hours a week, always feeling guilty about what I wasn’t doing for Jordan or my other kids. My husband left after Jordan was born. Now I can give Jordan the time he needs, and my other children, too. I massage Jordan’s legs in the morning. After he comes home from school I take him for a walk on his walker. Now Jordan doesn’t have to worry about anything in his future. He has everything he needs to live up to 100% of his potential. Right now my goal is to get him more aggressive therapy so that maybe he can walk someday.

“My Faith Got Me Through”

Jordan laughs a lot. He loves his brother, sister and music. He always sings along in the car. His laugh is so contagious. He’s fun to be around. One of the things the money will let me do is get a new house so that he can get around using his wheelchair, and he’ll have space to play. My faith is what has gotten me through. I’ve grown a lot since Jordan was born. I’ve been able to see that God really cares. The settlement we received is an awesome blessing, but more importantly, so is Jordan.

GERD: One Mother’s Two-Year Struggle for a Diagnosis

By Lee Vander Loop
CP Family Network Editor

Like a lot of new parents of a child with cerebral palsy, I tended to think of CP’s affect only on muscles involved in movement and mobility. I didn’t consider CP’s possible impact on muscles that help gastric emptying, swallowing, bowel mobility and a host of other body functions. But I learned fast, and I learned the hard way.

From birth, feeding my daughter, Danielle, was always a long, painstaking ordeal. It often took up to three hours to feed one 8-ounce bottle of formula. Afterward, she would scream, arching with discomfort and no amount of burping or comforting seemed to help.

At first, I thought she was experiencing colic and consulted her pediatrician. He suggested she could be refluxing and ordered a Gastrointestinal Endoscopy study. It came back “reflux within normal limits.” When Danielle was about eight months old, we started nasal-gastric (NG) tube feedings. Although this proved to better meet her nutritional needs with less effort on her part, she continued to show signs of pain and discomfort after feeding.

After using the NG tube for a year, I noticed Danielle had developed a cough, which her doctored diagnosed as a cold. After 3 months of dealing with the “chronic cough,” I was still being told it was a cold. I said if that was the case, then the doctor needed to contact the Guinness Book of World Records because this “common cold” had lasted more then 3 months and she was now spitting up formula with the cough. That got his attention. He ordered more tests, and although they were inconclusive for reflux, they indicated a delay in gastric emptying. So, after 18 months of using a nasal-gastric tube, doctors recommended Danielle undergo surgery to have a G-tube permanently implanted.

At first I resisted. I was adamantly opposed to any surgical intervention. I had seen children at my daughter’s school with the G-tube, and it was very intimidating to me, as was the thought of the procedure itself. But it became obvious even to me that our daughter’s quality of life was being compromised as a result of my fears and resistance. I knew we couldn’t continue to use an NG-tube for her feedings long-term; it was causing chronic irritation to her sinus cavity, and it was getting increasingly difficult to insert the tube. The doctors said Danielle also needed a nissan fundoplication procedure, in which the top of the stomach is banded to prevent reflux and aspiration. I finally agreed.

After the surgery, we learned the worst. The surgeon said she was shocked by the condition of my daughter’s esophagus. It was so damaged and eroded that she lost a lot of blood during the procedure. The cause? Two years of undiagnosed and unchecked reflux. Two years of pain and suffering. I was angry but not surprised. I knew something had been wrong.

The nissan fundoplication and G-tube placement turned out to be the best decision we could have made. It resolved the reflux and discomfort associated with it. The G-tube alleviated the all too frequent trauma of passing the NG tube, and best of all, it allowed our daughter to get the nourishment she needed.

Signs and Symptoms:

Reflux occurs when the sphincter (muscle) between the esophagus and stomach doesn’t work properly, allowing stomach acids to back up into the esophagus and causing a burning or heart burn sensation. In non-verbal children this may lead to range of behaviors after feedings:

  • Obvious discomfort and irritability, including screaming, posturing and arching
  • Coughing
  • Spits of formula or food accompanied by coughing

Gastroesophageal reflux disease (GERD) is especially difficult to diagnose in young non-verbal children. But if left untreated, chronic reflux can cause serious complications. Inflammation of the esophagus from refluxed stomach acid can damage the lining and cause bleeding or ulcers, also called esophagitis. Scars from tissue damage can lead to strictures, narrowing of the esophagus, that make swallowing difficult. This is what happened to Danielle.

There are medications and many non-invasive options for managing reflux and delayed gastric emptying. In severe cases like Danielle’s, your doctor may recommend surgical intervention.

Lessons Learned:

  • GI studies can be misleading and subject to interpretation. Reflux doesn’t happen on command during a GI study.
  • Follow your gut instincts. A parent knows their child better than anyone. If you suspect something is wrong, then you probably have cause for concern and you need to persevere until you get answers.
  • You are your child’s only voice. Keep a journal, noting feeding regiments, times, volume of intake and description, time and duration of any adverse behaviors you may witness that make you suspect reflux or other GI issues. A journal may show a pattern and will help give your doctor insight.
  • Consider making a video of what you see, again, to help the doctor understand what you and your child are experiencing.

The bottom line? You are your child’s best advocate. If you think there’s something wrong, don’t stop asking questions and challenging your doctor. They are not always right.

Resources

http://digestive.niddk.nih.gov/ddiseases/pubs/gerd/#1

Gastroesophageal Reflux in Infants

Gastroesophageal Reflux in Children and Adolescents

Reflecting on 2014, Looking Forward with Hope

As we enter into the new year, I would like to take a look back on 2014. For me, the last two years have brought a lot of personal growth. There was one major positive change in 2014, during the spring of last year, when my sister and her daughter moved in with me. It was a big adjustment for all of us, but quite possibly one of the best things that could have happened. Also, I made new friends last year as well. They treat me just as they would anyone else and have affirmed just as many others have for me, that being around positive people brings out positivity in you!

What am I most thankful for this year, as with every year, is family and friends. They keep me going and are the biggest reason (aside from my Faith) as to why I always have such a positive outlook on life. Even when things were not great last year, I always reminded myself that everything would be ok no matter the outcome. There is always something positive in everything that we endure in life. We just have to look for it. It is when we choose to only see the negative side of things that we receive a negative outcome.

Meeting A New Challenge

One of the biggest changes for everyone was my sister and her daughter moving in. After much discussion we decided this decision would be the best for both of us. I would have someone around and also have other help I needed, and she would have the help she needed in having someone to care for her daughter while she worked. What I have learned through this change most of all is not just how different we are as people, but how well we come together and make it all work out for the good. I learned that we deal with situations differently and that is okay. I learned that I am able to keep calm in very high stress situations. I attribute that to having to deal with the many challenges that my cerebral palsy throws my way every day.

Continuing Positivity

In 2015, I want to continue to be positive. I also want to bring about more awareness through my writing for CPFN as well as on my personal blog. I also plan to be more aware of when I am worrying about mindless things. Those who know me personally know I do this often. We all know what happens when we worry. We are just wasting energy and time knowing nine times out of ten what we are worrying about is not even going to happen. We just get all worked up for nothing. I want to learn to focus that worry elsewhere, looking for something good, and knowing that I will be taken care of.

I want to wish everyone at CPFN a wonderful 2015 full of happiness and blessings! I hope to get to know more people/families involved with CPFN. I hope that we can all help one another be positive in everything in the year to come. I cannot wait to see what lies ahead!

I would also like to include a link to one of my posts on my personal blog about positivity. Enjoy!

Staying Positive in the Midst of A Storm

 

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