Featured Child

Elijah’s journey began long before he was born. After one miscarriage and 4 years of trying Eli was an answer to many prayers. My husband Chad and I were thrilled when I became pregnant for the second time. We entered into this pregnancy with many reservations. We were so excited before we lost our first baby we were afraid the same thing would happen again. My pregnancy went well until I found out I had gestational diabetes. With some minor adjustments to my diet it was easily controlled. We started preparing to become parents. I couldn’t believe my dream was finally coming true. February 15, 2003 at 10:15 a.m. Elijah Jeramie Kurtz came into this world. He was born a healthy baby at 6lb 8oz.20 ¾ inches long. Not to bad for being a few hours late. His journey has only been 16 months so far. In that short time he has touched so many lives, and endured so much more than anyone could imagine.

Our new family was settling in at home when things started to go wrong. Elijah kept vomiting. Not just a little spit up. He quickly dehydrated and his first ER trip was at a week and a half old. After three nurses and five tries to get the IV in, they finally were able to give him some fluids. They also ran an ultra sound to check his pylorus muscle. They said it looked good, thick but good.  We took him home and started around the clock feedings every 2hours. He was nursing so this required pumping, measuring, feeding, and repeat. Vomiting almost everything he was feed. This was nuts. Our little guy can’t live like this. We tried everything suggested for reflux. Gradually it worked up to projectile vomiting. Elijah’s cousin had a similar problem that was corrected by surgery. Eli was displaying the same symptoms. We knew it had to be pyloric stenosis . It is a condition where the muscle between the stomach and small intestine is too thick. It does not allow food through to finish digesting. The only place for the food to go is back up. Little Eli was hungry and crying all the time. His doctor sent us to Presbyterian St. Luke’s hospital in downtown Denver and we sat for hours trying to get Eli in for the tests. They confirmed it was pyloric stenosis . He would need surgery. Our little guy was only 3 weeks old. We had been in the hospital all day with a screaming baby and now he had to wait one more day. They wouldn’t let us feed him so he just cried and cried. We felt helpless. All he knew is that he was hungry. The day after the surgery was spent feeding again every two hours working up to the normal breast milk. We brought him home and things were getting to a normal pace. We thought this surgery would be the worst thing at least for a while. Never foreseeing the worst was just around the corner.

 Elijah cried so much. He was very irritable and was only comforted when he was held. Chad and I tried everything others had suggested, car rides, gas drops and anything we thought might help. The suggested car rides were a nightmare. Traffic around here is bad enough and to have a screaming baby only made it harder. I held him all the time. He slept across my chest most of the day and almost every night. We walked and bounced all around the house at all hours. When I did put him down, He screamed. People were telling me I was holding him too much. We were new at this parenting thing. I started to question my ability to be a mom. Normal babies cry I had no Idea his crying was excessive.

I believe it was around 3 months old Elijah was showing signs of delayed development. He wasn’t hitting his developmental milestones like he should have. Along with his doctor we thought it had to do with the trauma from his surgery. Everything we read said not to worry until six months of age. Breastfeeding was going alright but it took awhile for him to finish one meal. Looking back I can see where his interest in eating should have been better. He was showing signs that were increasing our concerns. His eyes were not fixing and following like they should. Our doctor, understanding our concern referred us to an ophthalmologist. The eye doctor said he didn’t see a problem but referred us to a neurologist. The appointment with the Neurologist was three months away. While we waited Eli calmed down and wasn’t crying as often. Wow, we were finally going to be normal. Then he stopped crying all together. Even though he wasn’t crying he appeared very uncomfortable arching his back and stiffening his arms and legs. His development was going the wrong way. He stopped rolling over; his head control weakened and his pour sucking ability caused him to lose weight rapidly. He was so skinny we took him to the doctor yet again. He had not gained weight since his four month check up. His doctor sent us to the ER at The Children’s Hospital of Denver.  We had no idea what that trip would mean. Our dreams would be crushed by one thirty minute car ride. After many tries to get blood form our malnourished little angel the flight surgeons were sent in. They were able to get enough blood to run some of the tests needed. A head CT was also done. My husband and I sat in a small ER room for hours. It seemed like days. The lead doctor came in and told us some of the tests were back and it was bad news. Our baby had a significant insult to his brain, specifically the thalamus and basil ganglia. The blood work suggested that he might have a metabolic disease. I knew I should have spent more time in science class. I didn’t know what they were telling us. What was a metabolic disease and what did it mean for Eli? That night was the longest night of my life. At this point we only knew our son would be a “Special Child”.

The doctors decided Elijah would have to be admitted to the hospital. Our stay at Children’s proved to be educational and unbearable. The worst four days ever. We learned that our beautiful son had a terrible illness called Leigh’s Syndrome. It is a disease that most doctors and nurses have never heard of. It is a mitochondrial disease for which there is no cure. He had so many doctors trying to help and they couldn’t do anything. Our hopes and dreams for our baby boy were crushed and the chances of having a healthy child are unknown. Oh my God was this really happening to us. We took our angel home and promised to love him with all our hearts for however long he is here on earth.  The best advice we received was from the neurologist. In the midst of all of the turmoil and uncertainty he said, “Take you son home and enjoy him. Do all the things you would normally do. Take him to the park, take him to the store, love him.”

Church is something that is important to my husband and I. The December before Eli was born we started attending a new church.  After two years of searching for a church, God led us to North Metro Church. When Elijah was diagnosed, I realized why. From the hospital a call was made to the church letting them know what was happening. The Sunday after he was diagnosed at church the worship leader told the congregation our story. So fresh in our hearts it was hard to hear. I kept wondering who she was talking about. I looked at my sweet little angel and knew it was us. He was very skinny and had a NG-tube through his nose and taped to his face. He just looked sick. My husband, Mother in law and I, cradling Eli, slowly walked up to the front of the church. The whole church gathered (emotions pouring out) around and prayed for us. It was a true blessing.

The journey through August and September was an emotional one. He had an NG feeding tube through his nose. It made it difficult for him to breathe and swallow his own saliva.  He even pulled it out, requiring another trip to the ER to have it replaced. In late September Eli had surgery to put a G-tube into his stomach. This allowed him to be fed through a tube in his stomach and receive all the nutrition that he needed. The surgery was beyond scary. The surgeon told us that due to Elijah’s weakened abilities he might have some added difficulties coming of the ventilator after surgery.The surgery went fine, the button was placed and he also had a procedure called a Nissen Fundoplication. A issen is where they lift and wrap the stomach around itself  to prevent reflux. What a blessing the surgery proved to be. Still able to feed him breast milk he was now 100 percent tube feed and was gaining weight and looked healthier. Careful not to have him exposed to illness we were selective of where we took him.  It is not fully understood, but children with metabolic disorders while not anymore susceptible to illness, are more profoundly affected than other children.  They may even act as a catalyst to accelerate the progression of the disease.  Eli was having countless seizures and we noticed his muscle control was getting weaker. All attributed to Leigh’s.

In October and November the combinations of medicines were controlling most of the seizures. He was stable for a while. He was also admitted to Hospice care at home. The disease caught up to the meds. He started having more seizures but they changed. It is so hard to explain his different seizure activities. The phrase “I think that is a seizure” became common. The medicines were changed and increased until he was stable again. He was also having these weird episodes that at the time we thought might be seizure activity. He would wake up and howl in
fear.  It was the scariest sound I have ever heard.  It broke my heart to hear it.  It looked like my little baby was frightened. There was nothing we could do but get to him quickly and comfort him.  Although this did not have an impact on the duration of the episode, it was all we could do.  We wondered if maybe he was loosing his eyesight. It would be frightening to wake up and not be able to see. These episodes were very difficult to watch. I wanted to cry and sometimes I did.

December brought with it joy. Eli had made it to his first Christmas. We had a wonderful time. We felt so blessed. We celebrated like it would be his only Christmas. His diet changed from breast milk to normal baby formula.  January was more doctor visits and checkups. The only thing left was to find out what had caused Eli’s Leigh’s syndrome. He had a muscle and skin biopsy and a few blood tests. The tests were sent all over the country. Nothing came back abnormal. So at this point we are at the end of the testing. They say that tissues might be able to be frozen at autopsy. The tissues would then just wait for science to catch up. We realize we may never know.  This means that our odds of recurrence are between 0 and 100%.Not much help.

February 15, 2004 our little man turned 1 year old. He is the biggest blessing ever. My husband and I cherish every moment we have with him. Ever little thing that he can do is a wonderful sight to see. We didn’t think we would have him this long. His birthday was truly a celebration. The birthday party we planned was larger than most 1year olds would have.  We chose a cowboy theme and bought him a hat, boots, a lasso, holsters with sidearms and a sheriff’s badge. We invited everyone Elijah has touched in his short life. I even had to move the party to the church to accommodate all of the people who love him. Family came from Omaha.  It was a wonderful celebration. It was a celebration of Elijah’s life.

In the last few months we have been enjoying Eli. His diet changed to Resource for kids. I started his caring bridge site, which is a wonderful way to let everyone know how the day to day is going. Sadly, we have noticed more progression of his illness. His sounds are not as strong. I could always tell if something was bothering him. I have to read his face to see if he is ok. In the past he could bat at toys and now he is moving his arms less. The seizures are happening more frequently. I am pleased he is still able to communicate in is own way.

Leigh’s syndrome is rare and life expectancy is short. It is mainly a genetic inherited illness and may affect any future children. Normal life for our family consists of loving our son unconditionally. I have had the privilege of reading other stories of children with Leigh’s. Most of them have already received their angel wings. The few that were living with it were in poor medical condition. It is a horrible disease. Instead of hoping for a cure I pray that it won’t happen at all. Metabolic and Mitochondrial diseases in general are awful. For some, empirical treatments are available that consist essentially of a guessing game of diet, vitamins, enzymes and medications aimed at controlling side affects of the disease. Quality of
life for these children is very different than that of a normal child. The decisions parents have to make are nightmares. There is a constant measuring of what is best for your beloved child.

Elijah’s journey is not over yet. He has so much to show us. I have learned a great deal from my little son. He is loved by so many, even people who have never met him. Eli has forever changed many lives. He is a little boy with the power to suspend time. When holding him, nothing else matters. Peaceful, timeless and unconditional love, are words that describe the moments with this beautiful child, my son.