Make A Child Smile

Kimberley's Story
written by mom Mary

On November 29th, 1993 our family was blessed with a beautiful little girl named Kimberley. She weighed in at 6 lbs. 1oz. All was going well her first 4 months of life.

She all of a sudden started not wanting to eat but an ounce or two at a time. She would then go to sleep. Her weight started staying the same for about the next 4 months. The doctor could not find out what was wrong with her. He then decided to send her to Kluge Children hospital to find out why she was not growing. We went when she was 8 months old. We were to stay for a week and were to get the full work over. On our first day there the doctors watched her eat. On the following day they were going to do a MRI but decided to do a chest x-ray first. From that x-ray on our lives changed forever. They sent us right away to University of Virginia. They wanted to do surgery right away on her heart. She had a Coarctation. Her heart was three times the size it should have been. They said for her to drink a bottle was like for us to run a marathon. She had the surgery the next day and about a week later was sent home.

All went well for the next couple of months. Around Christmas time she started acting different again so we went back to the doctors. They said she was in trouble again. She now had a large ASD that needed to be fixed, but because of the Coarctation her lung pressures were high. The doctors thought she would need a heart and lung transplant. As all this was happening our insurance was changing and the new company would not allow her to stay with the same doctors. We had to go to Children's hospital in DC. The doctors there thought they could fix the ASD and she would not need a transplant. She went in had the surgery and all seemed ok until a week post op.

They removed the pulmonary artery line and she bled into her chest. She ended up coding on them three times. We were told she would not live through the night. They said her only hope was for us to put her on ECMO (extra corporeal membrane oxygenation). So of course we did. She was on this for thirteen days. When she came off they found out she had had a stroke. She was also now having seizures. She spent a total of seven weeks in the hospital, six weeks of that was in PICU. When we first went in we were told we should be there a week at the most, that was one long week. That was when we brought a child home that looked like our Kimberley but was not the same Kimberley we took into the hospital. She came home with a whole new list of problems, seizures, and the whole right side of her brain gone, Cerebral Palsy and Hydrocephalus (no shunt). She could no longer hold her head up or could no longer use the left side of her body. She slowly started to get a little better.

Over the past few years she has learned to sit up and to crawl with the use of one hand (she looks like a frog, too cute). Up until the past few months she has been doing well. She has started to have more seizures and we took her to a new doctor. She wanted her to have an EEG. Well we did that and the results were really bad. It showed she was having them every second (yes I said second). They added a new medicine and will do a new EEG when the levels are high enough. When I asked the doctor what this would do to her life span she said it would shorten it. We are now in a wait and see game. She is having the seizures on the left side of the brain. The whole left side is having the seizure activity so I don’t think surgery would work for Kim. Kimmie had hip surgery on November 7th, 2001. They cut the hip socket and pulled it down. This was the second hip surgery she has had. She was in a cast again from the waist down for six weeks.

In March of 2002 Kimmie had a VNS placed in her upper left chest. This is like a pace maker for the heart but is used for seizures. It has a magnet that we can use to stop a seizure when she has one. It has helped with some of the seizures but not all of them. The end of that same year something happened to Kimmie that no one knows what it was but she started not acting herself. She slept a lot and lost a lot of her skills.

Kimmie is still having a lot of seizures at this point. She is now back on two meds. The doctor feels that the only thing we have left is the diet for the seizures. We are not sure about taking away one of the few things Kimmie enjoys in life is food. If she were to go on the diet she would have to eat small amount of food (measured in grams) and very little fluids.

Her hips seem to be hurting again and the orthopedic doctor said in November of 2003 that she will need another surgery. We will be taking her back to see him soon to set the date for the surgery. He will also look at her back at the same time to see if she needs anything done to that as well. He said that he thought she would be in a cast for 6 weeks to 3 months.

Kimmie’s health continues to change. Over the past year we found out that when Kimmie has any liquid that is thinner than honey it goes into her lungs. She now needs everything liquid thickened. Thick milk looks gross!

Kimmie’s seizures have not gotten any better. The doctors have done all they can for them. The new big issue we are having is her bones. Kimmie has been having a lot of breaks or hair line fractures. Her body is not liking calcium for some reason. The doctors want to start her on a medicine that is only given by IV. It has never been given to kids like Kimmie but has been used for kids with Brittle Bones. I never thought how hard it would be to have a child with severe Osteoporosis.