Make A Child Smile

Ceci's Story
written by mom Alexis

I was almost five months pregnant with Cecilia when she was diagnosed with having Myelomeningocele (also knows as Spina Bifida) by advance ultrasound. Her level was L3-L4. I was also told that she had Hydrocephalus, Arnold-Chiari malformation and clubfeet. I had no idea what any of it meant, because I had never heard of any of these defects and I was so scared. They told me that they wouldn't know how affected she was until she was born so it made it so hard to be prepared, not knowing what to expect.

Ceci was born on May 13th 2005 at 1:39am in Iowa City, Iowa, by emergency c-section. She was breech and came a month preemie. I didn't even get a chance to hold her or even touch her because NICU doctors whisked her away to try to prevent any infections from Ceci's Spina Bifida lesion. She had her first surgery only a few hours later. It was to repair her back lesion. I got to see her afterwards. Where I learned that Ceci also had a VSD, a dislocated and turned in left knee, a dislocated left hip, paralysis in her legs and feet and that she may need a VP shunt to control her hydrocephalus.

Ceci stayed in the NICU for about 11 days mainly spent on her tummy while her back healed. Before we got to finally leave the hospital, Ceci was placed in her first set of long leg casts to repair her knee and clubfeet. She spent a lot of months after that, in set after set of long leg casts to repair her feet. A month later, Ceci was back in the children's hospital for her second surgery. She had to have a VP shunt placed in her head to relieve the pressure from her hydrocephalus. She spent about a week in the hospital and then we got to go home.

Ceci was back in the hospital in August 2005 for her third surgery. Her shunt wasn't working right so they had to fix it. Then in October we were back for another shunt surgery and her fourth surgery. In January 2006 Ceci had her fifth surgery, a hip surgery to try to repair her dislocated left hip. She had the surgery and then was placed in a hip spica cast or a body cast that went up to her armpits and went down to her toes. She was suppose to spend only 3 months in the hip spica cast to repair her hip but she had some complications.

In March 2006, Ceci had to have her sixth surgery, a bilateral hernia repair. Afterwards they said that she should be fine and feeling better in a day or two but they were wrong. Ceci continued to get sicker and sicker as the time went on. She completely refused to eat or drink, she was vomiting, had severe diarrhea and was just acting like she was in severe pain. The doctors thought that it might have been another shunt problem but it wasn't. After spending a week and a half in the hospital with test after test being done on her, I decided to take Ceci home and see if she got any better there. I scheduled an appointment with her orthopedic doctor because I had noticed that after they took Ceci out of the hip spica cast to do her hernia surgery, Ceci had some swelling in her left leg and it was hot. The doctor did some x-rays immediately and found that Ceci indeed had a broken leg. She had been in so much pain from it and no one figured it out. It made me so mad because Ceci suffered for almost 2 weeks and I said time after time, "I think her leg is hurting her", but no one would listen to me. From that point on I knew that I had to be Ceci's advocate and make sure that people listen when I thought something was wrong. We know our children better then anyone and I had to learn that the hard way for Ceci. I felt so horrible.

After the horrible situation with the hospital, Ceci was placed back into her hip spica cast to repair her break and try to fix her hip again. She spent a total of 6 months in the hip spica cast in 2006. We were back for another surgery in October 2006. Ceci had more problems with her shunt and went under to have it replaced. This time they put a reprogrammable shunt hoping that her problems with it would die down. In December 2006 Ceci had a follow up appointment with her orthopedic doctor and we found out some more bad news. Ceci's right hip was becoming dislocated just like her left was. Because of the Spina Bifida, her muscles are weak and can cause these orthopedic issues. So in January 2007, Ceci had her eighth surgery for her right hip dislocation. She was placed back into the hip spica cast again and was just plain miserable. This time the cast just made Ceci so depressed. She wouldn't eat and just wanted to sleep most of the day. But we got through the hard 4 months and thought the cast nightmare was over.

Ceci was happy and was back to being a normal baby. But a week later, she became very ill again... high fevers, she was in pain, vomiting, diarrhea and just wanted to sleep. Right away we thought she either was having a shunt malfunction or a shunt infection. She was admitted to the hospital and had test after test done again. No one could figure out what was going on. She had so many doctors on her case and no one had a clue. Finally one of the doctors asked to have a bone survey done on Ceci. Which is to have her whole body x-rayed. We found out more bad news and in a bad way. A doctor came and told me that they just found 5 breaks in Ceci's fragile legs and that they were reporting me and calling Social Services. I was ecstatic and very upset about the whole thing. I couldn't believe that they could think that I would hurt Ceci. But when Ceci's orthopedic doctor heard about it, he quickly clued in the other doctors about all the casts Ceci had been in and all her conditions. Come to find out Ceci had severe Osteoporosis due to her Spina Bifida and the fact that Ceci had been in casts more of her life than out. I was told that it severely thinned her leg bones and caused them to be very brittle. Which causes them to break at the slightest pressures put on her legs. The other doctor quickly apologized and understood what was going on then.

Ceci was placed back into another hip spica cast and within a day she was getting better. But the next months were a nightmare for Ceci and me. She was in the hip spica cast for four weeks until her breaks were healed and then it was removed but as soon as a week went by without a cast on, Ceci was back getting x-rays and we would find another break. This went on from the end of April until August 2007 and Ceci was miserable again. But finally after almost a whole year in casts, her breaks stopped. We were both so happy, especially Ceci!!

Ceci's VSD closed up a few months after she was born which we were so grateful for. But she developed GERD, Chiari symptoms, and eye problems, which we deal with everyday. She's on medications daily for her kidney reflux, GERD, neurogenic bladder, and her Osteoporosis. She does speech therapy, physical therapy and occupational therapy weekly.

At the end of September 2007, Ceci became very ill again and was hospitalized again. She was released after many tests were performed and they couldn't figure out what was going on again. Two weeks later in October she was hospitalized again. They didn't know what to make of it. A couple of days after we got home, she was ill again. She has had bad diarrhea since September so we are seeing a doctor to figure out what's causing this. We recently found out that Ceci has an eating disorder called Trichophagia. It's where a child eats hair! Since hair doesn't dissolve in the stomach, it can ball up and cause intestinal blockage. So we are praying hard that this isn't the issue. We fight everyday to keep Ceci healthy and despite all this, she is such a happy child!! Thanks for reading.