Make A Child Smile

Olivia's Story
written by mom Barbara

My husband and I had tried to have a child for 3 years. We were on our way to some more extensive procedures when we were surprised by our news that we were pregnant. When Olivia was born she did have a bowl moment inside before birth, she was breech and six weeks early. She showed signs of jaundice that lasted several weeks and had trouble maintaining her body temperature. All these things led to a misdiagnosis for her.

Through her first three years, her lack of weight gain, her elevated liver enzymes and body temp were always attributed to being a premature baby. Later, as we would learn were signs of mal nutrition, she developed skin rashes, spider veins and chronic sinus/ear infections. Her pediatrician just explained away all of her signs to infections and viruses. Being new parents, we did not know that these things were not "normal".

In January of 2000, Olivia started having severe headaches. They did all the cat scans, MRIs, meningitis tests and again told us it was a virus. In April, the headaches resurged and Olivia was very lethargic. Thankfully, we had moved to a new area of town and had found a new pediatrician. He immediately sent us to the Children's Hospital.

When we arrived at the hospital, through a battery of tests they only knew that Olivia's body was full of toxin and her liver was in complete failure. After a week, with no signs of recovery of the liver, they life flighted us to Atlanta for an immediate transplant.

In Atlanta they discovered that she had a rare form of Cystic Fibrosis and her malnutrition was so great that she would not be able to withstand the transplant. In knowing what they were dealing with, they were able to revive 5% of her liver. We went home to await a transplant. We were encouraged to do a new procedure in liver transplantation called a split liver. We were told that Olivia would need to have the transplant before she became sick again. So we made the decision to find a donor. A lady from New Jersey that we did not know at all became Olivia's donor. On November 7th, 2000 Olivia underwent her transplant.

At transplant Olivia had a thrombosis (blockage of the main artery to the liver) and the liver went 8 hours without blood flow. From this set back, she has developed strictures in her bile duct that does not allow her bile to flow into the small intestine. She currently has two bile duct external drains. She is now on an NG tube for continual feedings so she can maintain and gain weight. Olivia has developed the highest case of CMV that her surgeons had ever diagnosed, she has had 5 different rare blood bacteria's from those bile duct stents, and has not maintained a strong weight. She has been considered an inpatient for an entire year because we have spent less than two weeks at home at a time.

Then miracles of miracles we took those stents out to see how she would do. She was able to keep them out for 1 year. She had only her G-Tube which was wonderful. But, this did not last and this year has probably been the hardest on Olivia than the last few years. She lost her Nana (My Mom) to cancer in January of 2004. Mom and Olivia were very, very close and the cancer treatments only brought them closer. They had more things in common. But unfortunately for us, Mom went home with the Lord and to a better place. We miss her terribly.

Then about a month after Mom passed away, Olivia started getting sick again. We had to have all her tubes put back in. It was so hard for her, mentally and emotionally. We have been back and forth to the hospital again just about every week. But she has been a trouper. She is old enough now to anticipate what is going to happen so it's not as easy on her as in the past. But we are making it through.

We are almost seven years from her transplant and we have tried everything with those stents to make them work. Now Olivia’s liver is failing again.

We are not sure when we will retransplant but it will be coming. The hard thing is watching Olivia get sicker each day. The first time around she was so small and could not tell us how sick she was and we had no idea.

So for us, there was no warning but just everything happening so quickly. This time, she is older and she can tell us how tired she is. You can see how sick she looks now. So we are taking one day at a time and making the most of it. She is in Ballet again, Heritage Girls (a Christian type Girl Scout) and Drama. So she has a lot to keep her mind focused on other things and her spirit strong.

As always, Olivia is holding on. She has been such a joy and inspiration to all that meet her and it is wonderful to know she lives life to the fullest and gives her all at anything and everything she does. We are proud of her attitude and how she is handling all that she is going through at this moment in time. She could not have done all of this on her own strength. Thank you for being there for Olivia and being a part of our lives.